Arima Mishra · Kalyani Subbiah Editors

Ethics in
Public Health
Practice in
India
Ethics in Public Health Practice in India
Arima Mishra • Kalyani Subbiah
Editors

Ethics in Public Health

Practice in India
Editors
Arima Mishra Kalyani Subbiah
School of Development International Health Program
Azim Premji University Curtin University
Bangalore, India Perth, Australia

ISBN 978-981-13-2449-9    ISBN 978-981-13-2450-5 (eBook)

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Foreword

Now we feel ethics is everywhere (Comment from a student reported in Chapter 10)

This book’s creation comes from a meeting that was held at Azim Premji
University, Bangalore, in 2014 to address public health education where ‘the need
for conscious nurturing of ethical values of public health’ was stated and the con-
cept of ‘public health ethics as an enquiry’ debated. The words enquiry, values and
conscious are the key in the role of education in public health ethics in the twenty-­
first century. How do we help students to be inquisitive about public health and to
enquire into difficult ethical dilemmas? How do we work to instil values and what
should they be, and how do we help raise their consciousness of the issues and
importance of public health ethics as a subject?
In the first chapter, it says that ‘public health ethics as a field of enquiry is at a
nascent stage in India’ with its knowledge and wisdom slowly emerging and yet, in
terms of ancient philosophical wisdom as well as important case studies that highlight
local, national and international issues around public health ethics, India already has
much to teach each of us about life and death, about health and disease, about commu-
nity and population and about how each of these issues relates to public health and to
ethics. The scale of the Indian situation in terms of land and population brings to the
fore the major international issues of the day in ethics, and each of the chosen authors
provides an important unique perspective on public health ethics in India with chapters
focussing on teaching, rights, programme design and evaluation, analysis of public
health programmes, the role of public health ethics in the design of non-public health
programmes, data ethics, ethics issues in gender and reproductive technologies, qualita-
tive research on health systems, teaching ethics in medical college and finally a descrip-
tion and analysis of the course in public health ethics at the Azim Premji University.
Important themes emerge from these chapters: education and the human condi-
tion, self-reflection and relationship; community, values and education; and the
individual versus the population which is at the heart of public health ethics and
how to balance the needs of the individual versus the needs of the population. The
powerful theme of education dominates the book and provides insights into how to
enquire about ethical values, how to nurture them and how to work with them in
public health situations.
v
vi Foreword

Themes that Emerge in the Book

The Individual Self

The individual self is highlighted in the book. Who am I and what role am I playing
in public health? Am I an educator, a student, a medical officer or a data analyst, and
what values do I bring to my work in public health? Each of the authors provides a
different perspective.
Ethics is about actions, and therefore, in a sense, everything we do is about ethics
as is noted in the quote to this foreword from a student at Azim Premji ‘now we
think ethics is everywhere’. Another student said ‘ethics is humane and it is impor-
tant that one looks within first before trying to address any others issues out there’.
It is essential therefore that each of us does just that. The better each of us under-
stands ourselves, who we are and our roles in public health, the better for the com-
munities and populations that we serve.
However, as ethics constantly reminds us, knowing ourselves and being better
able to empathize and relate to others only happens through constant self-reflection
and debate. The individual self-reflection that is highlighted in Chaps. 1, 6 and 10 is
paramount and an important discipline for each of us in our public health work.
Self-reflection is part of qualitative research methods, and qualitative researchers
understand this with Chap. 6 on qualitative research in health systems highlighting
this point. However, it should also be an important discipline in epidemiology and
in those of us who work with quantitative data sets where there is a need to ponder
and reflect on all those individuals that are present in our population datasets and to
try and understand how our actions (our ethics) will affect each one of them. It is a
hard task, but I would say that for public health practitioners, this is an essential task
and one that is never completed.

Relationship

Of course relationship is important in public health because our roles and actions
have the potential to affect a large number of individuals. So, our ability to under-
stand and to relate to others and to become more sensitive and to be better able to
empathize with the issues, experiences and outcomes of people in different contexts
is important. The importance of vulnerability in life and vulnerability in public
health is highlighted (Chaps. 2, 5, and 8). How are people who sit at the edge, on the
margins of our societies, treated? What are their rights, and what are the ethics and
actions that are taken by practitioners to ensure that their vulnerability is respected
and treated accordingly?
Foreword vii

Communities

As we relate to others so we can then better relate to communities. Participation of

communities in all the stages of research is essential (Chap. 3) as is the need for
process and dialogues that is needed to find the best way forward in public health
decision-making (Chap. 4). This is challenging but essential as ‘The population or
community perspectives of public health is critical’ (Chap. 1) with the importance
of local decision-making in designing programmes to find the appropriate action
coming to the fore in the environmental ethics issues surrounding the endosulfan
tragedy (Chap. 5).

Values

What are the values that support our work? The importance of the high ideals and
principles of medical ethics is noted in the intention of St. John’s Medical College
in Bangalore ‘to instil the principles of moral values into the student so that they
could maintain high professional standards and integrity of life’ (Chap. 9). The
ancient wisdom of India present in the ancient codes of ethics and values that are
presented in classical Ayurveda is also mentioned in this chapter. Ayurveda is about
the ‘knowledge of life’, and its wisdom is profound and its knowledge and educa-
tion need to be brought forward into current medical and public health ethics.
Ayurveda understands what health is, unlike our Western systems that are about
disease and not about health.

Education

How public health ethics is taught is a challenge. The course at Azim Premji has
clearly been very successful, and Chap. 10 explains the constituents of the course
and its success. There are some wonderful insights from the students: ‘This course
has been a personal journey for me where I have constantly thought within myself
to understand the confusion that emerged……’; ‘I had never thought that one needs
to ask so many questions in the understanding of what happens and why it
happens’.
The course is clearly challenging and asks difficult questions like ‘What are we
training public health professionals for? Is it for the market or to be able to respond
to national needs?’ With the increasing medicalization of life happening around the
globe, we need to increasingly ask basic questions around education and training
and to ensure that the values inherent in public health practice through its service to
communities are honoured. Public health is not about the market or about profit, it
is about life, individuals, communities and well -being.
viii Foreword

 isdom and Values that Are Important to Public Health

W
Ethics

I agree with the student who says that ‘ethics is everywhere.’ The thinking and feel-
ing self that is described in so many different places in this book provides us with
the knowledge of life that includes important insights into ethics, roles and values.
How do I relate to myself and to others, and what values are important in my rela-
tionships with individuals and with communities? The ancient Indian local health
traditions provide enormous insight into the self, to health (‘swastya’, bring rooted
within) and highlight the importance of values in individuals, in communities and in
societies. These are the values that relate to the outside world through relationship
(Yamas, non-violence, truth, non-stealing, celibacy/marital fidelity and non-­
possessiveness) and to the internal values that each of us holds within ourselves
(Niyamas, purity of body and mind, contentment, self-discipline, self-reflection and
true self). These values are essential, as are the roles of feeling, of empathy and of
compassion in making us human. The teachings also indicate that before any action
is taken, each of us needs to reflect on all these parts of ourselves. So, ‘everything is
ethics’!

Conclusion

I have been waiting for a book like this and delighted to be able to write a Foreword.
India has such a wealth of knowledge in ethics and public health, and the rest of the
world needs more Indian writing on public health ethics, more writing that brings
forward the ancient knowledge of the country and the ancient wisdom and teachings
that percolate through life and the Indian system. This book is a wonderful start to
this process to ensure that public health ethics is no longer ‘nascent’ in India, and I
believe that the publication of this book suggests that India has begun to take a pow-
erful role in bringing the importance of public health ethics into the foreground of
health and health care, and I hope this book is simply the start of more publications
on ethics from Indian researchers and public health practitioners.

Professor of International Health John D. H. Porter

London School of Hygiene and Tropical Medicine
London, UK
July 2018
Preface

Public health, by its very definition, concerns and engages with the health and well-­
being of a population and focuses on the curative, preventive, promotive and reha-
bilitative aspects of that population’s health. These aspects rely on the allied values
and goals of equity, social justice and human rights. While it is acknowledged that
ethics is at the core of achieving the goals of public health, ethical analysis is mostly
assumed than consciously nurtured and applied in public health practice. This edited
volume on ‘Ethics in Public Health Practice in India’ has been conceived to locate
ethics at the centre stage of public health practice. In the process, it seeks to expli-
cate ethical analysis of public health issues, deliberations and resolutions.
The idea of this volume germinated in a visioning meeting on public health edu-
cation in India organized by us at the Azim Premji University in 2014. The meeting
was sought to be the first in a series of such consultations in order to identify the
niche for Azim Premji University to contribute to public health education, research
and training in India. More than 40 participants representing 20 institutions (univer-
sities, civil society organizations and research institutes) having long-standing
engagement with public health/community health participated in this deliberation.
The meeting provided a reflective forum for reinstating the community/population
orientation of public health, the concerns for increasing medicalization, technologi-
zation of health, high out-of-pocket expenditure in meeting health needs and persis-
tent health inequities. It was strongly felt that public health has a ‘social’ purpose
(unlike medicine that speaks to individual forms of care) that puts the ‘public’
(attentive to the needs of marginalized communities) and ‘health’ (all components
of health) at the centre stage. Hence all components of public health practice (pol-
icy, program planning/implementation, research, monitoring and evaluation, train-
ing) must contribute to this purpose. This discussion hence established the need for
conscious nurturing of ethical values of public health. This visioning meeting was
followed by several formal and informal consultations with public health profes-
sionals in taking some of the discussions forward. These discussions brought out the
need for explicit deliberations of public health ethics and the limitations of current
frameworks of clinical and bioethics to adequately capture public health issues and

ix
x Preface

concerns. In the same vein, internationally available ethical guidelines and ­protocols
remain fraught with the difficulties of context-specific applicability in settings that
have social, religious and legal realities that are unique and distinct from one another
in a country setting like India. This volume grew out of this collective concern and
felt need for unpacking public health ethics as a distinctive field of inquiry. As part
of this effort, we launched (2016–2017) a short 1-week training program on Ethics
in Public Health Practice for in-service public health professionals. Most of the
contributions to this volume came from the sessions facilitated by public health
scholars during this training program. Additionally, we reached out to others whose
work significantly sought to contribute to shape this evolving field of inquiry.
The volume draws on ten original contributions from academics and practitio-
ners in varying roles and long-standing engagement with public health in diverse
settings within India. The contributors are drawn from different disciplines and
areas of work including anthropology, sociology, health communications, gender
studies, economics, epidemiology, social work and medicine with a shared commit-
ment to the community orientation and societal understanding of public health that
locates health necessarily in its social/cultural/political determinants. Their perspec-
tives and experience, as a result, span a gamut of ethical enquiries including ethics
and rights; complex health systems; design, implementation and evaluation of pub-
lic health (and non-health) programs; research and advocacy on gender and new
reproductive technologies; managing datasets in the information age; capacity-­
building; and teaching of public health ethics in medical schools and universities.
Public health has evolved as a discipline with much stronger and robust engagement
with contributions from social sciences, and this volume reflects this interdisciplin-
ary orientation of public health.
The volume runs through four parts. Part I provides an introduction to the field
of public health ethics and analysis and moves on to present the juxtaposition of
rights and ethics and specific forms of contestations in the legal, social and health
systems contexts in India. This part seeks to throw light on the key manifestations
and influences of history in public health ethics in one platform. It also intends to set
the foundation to better understand the echoes and dissents of this history today.
Part II emphasizes the complex nature of programs in public health through cases
that illustrate both their possibilities and pitfalls in design, enquiry and analysis,
stakeholder management, adverse events, monitoring and evaluation. This part’s
unique contribution is to introduce ethics into design, implementation and evalua-
tion of public health programs. Despite the fact that programs have been the pre-
dominant modes through which policies are operationalized, ethical lens in the
analysis of public health programs is assumed or absent. Programmatic challenges
and disconnects are diagnosed, at best, as implementation failures and not as ethi-
cal/moral failures.
Part III discusses ethical issues in different kinds of public health research set-
tings and themes. These include the risks and benefits of large datasets in a con-
stantly changing information age and the need for vigilance in the management of
data pools with confidential and private health information. The part also includes
reflections on doing qualitative research in/on health systems and its complexities
Preface xi

and the ethical tensions at the crossroads of different epistemological traditions and
specific interpretations of ethical tenets including individual autonomy and privacy.
Experiences on research and advocacy on reproductive technology and commercial
surrogacy and its myriad ethical aspects from a feminist lens are further discussed.
This part also conveys how the boundaries between research and practice/advocacy
are blurred in public health settings necessitating a revisiting of standard research
ethics guidelines. Part IV discusses the criticality of human resources, upgrading
curricula in forums of learning, teaching and training opportunities designed for
students and young professionals who are set to enter and practise public health.
Both the chapters in this part share their reflections of the opportunities and chal-
lenges of teaching public health ethics in two different institutional settings and
programs (a medical college and university setting).
Every chapter either directly or indirectly reveals that ethical dilemmas or chal-
lenges cannot be contained as a checklist in a textbook or protocol in the best of
circumstances. Ethical problems rarely have one standard resolution, and it is the
rigor in the processes, deliberations and reflections that responses are likely to
emerge. The contributors also suggest that these resolutions need to be concurrent
with the facts, values and contexts in which they occur. Further, the volume tries to
go beyond understanding ethics from its application in health-care service delivery
and/or research settings, which traditionally garner the maximum attention, interest
and focus in such literature. The four parts together expand the ethical lens to differ-
ent aspects of public health practice including teaching, research and program
design/implementation/evaluation. The contributions, we hope, will be an initial
step to facilitate forums for future dialogues and platforms for different other dimen-
sions of public health ethics. The volume is not meant to be closed and complete in
discussing ethics in all aspects of public health practice. There are many other criti-
cal arenas including mental health, addressing other non-communicable diseases,
traditional medicine/healing, role of media, community monitoring, and community-­
based participatory research and many more where ethical issues need to be dis-
cussed and deliberated.
The book is conceptualized to reach broader audiences such as public health
practitioners and researchers in settings ranging from the government health sys-
tems to NGOs/Grassroot organizations/CSR (Corporate Social Responsibility)
initiatives/advocacy groups as well as researchers in academic settings and those
involved in teaching ethics and training initiatives for students and young
practitioners.
We thank and acknowledge every experience, participant, setting and contributor
that has made this venture possible. Specifically, we wish to thank the participants
in the visioning meeting and subsequent consultations, our colleagues and students
in the university whose inputs have enriched our understanding of this field. Last but
not the least, we greatly appreciate the time and efforts of the contributors who have
made this volume truly a collective endeavour. We missed some colleagues who had
xii Preface

willing to contribute (and shared their abstracts) but could not do so due to other
commitments. We nevertheless have benefitted from their work and hope to have
their continued engagement in public health ethics deliberations beyond this vol-
ume. We also wish to thank our family members for supporting us in this thoughtful
exercise. Thanks are due to the reviewers whose suggestions have helped in strength-
ening the volume.

Bangalore, India Arima Mishra

Perth, Australia Kalyani Subbiah
Contents

Part I Introduction to Public Health Ethics and Rights

1 Locating Public Health Ethics����������������������������������������������������������������    3
Arima Mishra and Kalyani Subbiah
2 Public Health Rights and Ethics: Conflicts, Contestations
and Expanding Horizons������������������������������������������������������������������������   21
Edward Premdas Pinto

Part II Ethics in Program Design, Implementation, Evaluation

3 Knowledge, Framing, and Ethics in Programme
Design and Evaluation����������������������������������������������������������������������������   45
Suraj Jacob
4 Ethical Analysis of Public Health Programmes:
What Does It Entail? ������������������������������������������������������������������������������   63
Giridhara R. Babu and A. Yamuna
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics
in Non-health Sector Programs��������������������������������������������������������������   85
Adithya Pradyumna and Jayakumar Chelaton

Part III Ethical Issues in Public Health Research

6 Conducting Qualitative Research in/on Health Systems: Ethical
Tensions, Confounders, and Silences������������������������������������������������������ 107
Surekha Garimella and Lakshmi K. Josyula
7 Data Ethics in Epidemiology: Autonomy, Privacy,
Confidentiality and Justice���������������������������������������������������������������������� 121
Vijayaprasad Gopichandran and Varalakshmi Elango

xiii
xiv Contents

8 Ethical Issues and Challenges in Research on Gender,

Reproductive Technologies and Market������������������������������������������������ 139
Sarojini Nadimpally and Deepa Venkatachalam

Part IV Capacity Building in Public Health Ethics

9 Public Health Ethics in the Medical College Curriculum:
Challenges and Opportunities���������������������������������������������������������������� 159
Mario Vaz, Manjulika Vaz, and Arvind Kasturi
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching
a Course on Ethics in Public Health Practice���������������������������������������� 175
Arima Mishra
 orrection to: Data Ethics in Epidemiology: Autonomy, Privacy,
C
Confidentiality and Justice�������������������������������������������������������������������������������� E1
Editors and Contributors

Editors

Arima Mishra is a Professor of Medical Anthropology and Public Health in Azim

Premji University, Bangalore, India. Her research and teaching interests include
social determinants of health and health equity, health system ethnography, public
health ethics, maternal and child health and medical pluralism. She has published
widely in national and international journals. She is the editor of Health, Illness and
Medicine: Ethnographic Readings (2010) and co-editor of Multiple Voices and
Stories: Narratives of Health and Illness (2013) apart from guest editing special
issues of Indian Anthropologist on Anthropology and Public Health (2013) and (co-­
editing) Global Public Health on Critical Ethnographies of Health Systems Policies
and Practices (2014).

Kalyani Subbiah has several years of experience in public health research, com-
munication and teaching in India. Her work is committed to risk-reduction, acces-
sibility to preventive measures and promotion of women’s health through ethical
responsibility of programs, research and key functionaries in health systems.
Kalyani is currently pursuing a PhD in International Health at the Faculty of Health
Sciences, Curtin University, Australia, with the support of an Australian Government
Research Training Program Scholarship.

xv
xvi Editors and Contributors

Contributors

Giridhara R. Babu Public Health Foundation of India, Indian Institute of Public

Health-Hyderabad, Bengaluru, India
Wellcome Trust-DBT India Alliance, Hyderabad, India
Jayakumar Chelaton Thanal, Trivandrum, India
Varalakshmi Elango Freelance consultant, Drugs for Neglected Diseases initia-
tive (DNDi) and World Health Organization (WHO), Chennai, India
Surekha Garimella Adjunct Faculty, Institute of Public Health, Bengaluru, India
Vijayaprasad Gopichandran Department of Community Medicine, ESIC
Medical College & PGIMSR, Chennai, India
Suraj Jacob Vidya Bhawan Society, Udaipur, India
Visiting Faculty, Azim Premji University, Bengaluru, India
Lakshmi K. Josyula The George Institute for Global Health, Hyderabad, India
Arvind Kasturi Department of Community Health, St. John’s Medical College,
Bangalore, India
Arima Mishra School of Development, Azim Premji University, Bangalore, India
Sarojini Nadimpally Sama Resource Group for Women and Health, Delhi, India
Adithya Pradyumna Society for Community Health Awareness, Research and
Action (SOCHARA), Bengalore, India
Edward Premdas Pinto Centre for Health and Social Justice, New Delhi, India
Kalyani Subbiah International Health Program, Curtin University, Perth, Australia
Manjulika Vaz Division of Health and Humanities, St. John’s Research Institute,
Bangalore, India
Mario Vaz Department of Physiology and Division of Health and Humanities, St.
John’s Medical College and St. John’s Research Institute, Bangalore, India
Deepa Venkatachalam Sama Resource Group for Women and Health, Delhi,
India
A. Yamuna Public Health Foundation of India, Indian Institute of Public Health-
Hyderabad, Bengaluru, India
 Part I
Introduction to Public Health Ethics and
Rights
Chapter 1
Locating Public Health Ethics

Arima Mishra and Kalyani Subbiah

Abstract Several global health challenges including emergencies like Ebola, envi-
ronmental disasters, rising epidemic of noncommunicable diseases, and persisting
health inequities, among others, have raised serious concerns about public health
goals and practices and necessitate an ethical lens to the “lessons learned” from
such challenges. The last two decades or so have witnessed an increasingly explicit
engagement with public health ethics in academic and professional forums trying to
carve out a distinct field of inquiry – distinct from clinical and bioethics though
sharing a historical legacy with these two fields. This chapter joins this conversation
to map this emerging field of inquiry in the context of public health goals and val-
ues, and examine its implications in the context of India. The chapter shows how
ethics is at the heart of public health practice and the methodology of doing public
health ethics demands a critical and reflective lens that discerns ethical dilemmas/
challenges in everyday practice and resolved through individual and collective
deliberations. Ethics in public health practice is hence not a one-off activity of seek-
ing ethical approval for research. It involves application of an ethical reasoning in
all components of practice including policy making, program design/implementa-
tion/monitoring/evaluation, different kinds of research, and communication and
advocacy.

Public Health Ethics as a Distinct Field of Inquiry

In their provocatively titled article “Ebola and Learning Lessons from Moral
Failures: Who Cares about Ethics?, Smith and Upshur (2015:305) remind the global
health community that “We cannot continue to fiddle at the margins without criti-
cally reflecting on our repeated moral failings and committing ourselves to a set of

A. Mishra (*)
School of Development, Azim Premji University, Bangalore, India
e-mail: [email protected]
K. Subbiah
International Health Program, Curtin University, Perth, Australia

© Springer Nature Singapore Pte Ltd. 2018 3

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
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4 A. Mishra and K. Subbiah

values that engenders an approach to global public health emergencies that embod-
ies a sense of solidarity and global justice.” Several global health challenges includ-
ing emergencies like Ebola, SARS, environmental disasters, health risks of climate
change, rising epidemic of noncommunicable diseases, and persisting health ineq-
uities, among others, have raised serious concerns about public health goals and
practices and necessitate an ethical lens to the “lessons learned” from such chal-
lenges (Smith and Upshur 2015; Verweij and Dawson 2018). Ethics is not new to
public health. Ethical challenges expressed in terms of the role of the government
vis-à-vis individuals/populations have been discussed and debated throughout the
history of public health. However, the nature of ethical issues has expanded as pub-
lic health itself has evolved as a discipline and extended its ambit of interventions in
response to continuing and emerging health conditions (Beauchamp and Steinbock
1999; Kass 2001). The last two decades or so have witnessed an increasingly explicit
engagement with public health ethics in academic and professional forums trying to
carve out a distinct field of inquiry – distinct from medical and bioethics though
sharing a historical legacy with these two fields. The increasing number of books
(Beauchamp and Steinbock 1999; Anand et al. 2004; Dawson 2011; Holland 2015;
Peckham and Hann 2010; Barret et al. 2016 to name a few) and discussions in jour-
nal forums including the launch of an exclusive journal on Public Health Ethics in
2010 are indicative of this evolving field of inquiry.
The distinctiveness of public health ethics rests on the goals and values of public
health itself. Public health, unlike clinical medicine, commits itself to protecting
and promoting the health of the population. Public health hence uses “socially ori-
ented strategies rather than individually oriented actions to achieve this goal” (Kass
2004:232). The population or community perspective of public health is critical.
Beauchamp and Steinbock (1999) emphasizes the communitarian language of pub-
lic health to imply that we, as a community, have a shared commitment to one
another and to promote health as a common/public good through collective actions.
Such collective orientation of public health underlines its distinctive “orientation
towards groups and communities as something over and above a collection of indi-
viduals” (Cribb 2010:22). The Institute of Medicine’s definition of public health in
1988 explicates and reinforces the community orientation of public health as “Public
health is, what we as a society, do collectively to assure the conditions in which
people can be healthy” (Institute of Medicine 1988:1). These discussions unravel in
many ways the question of who/what constitutes the “public” in public health and
its ethical implications. While Beauchamp (1983) in his essay on “what is public
about public health” reinforces the communal and shared orientation of the notion
of public, others disentangle to highlight the aspects of numeric public (target popu-
lation), political public (the government and public agencies with a political man-
date of shouldering collective responsibility), and the communal public (that
includes all forms of social and collective action by a range of actors) (Childress
et al. 2002). The notion of public/population gets further complicated when one is
confronted with extensive evidence on health inequalities. The inherent challenge in
unpacking the notion of the “public” is the heterogeneous nature of societies with
different social locations of individuals having distinct privileges and priorities. The
1 Locating Public Health Ethics 5

ethical challenges begin with when such inequalities (based on race, gender, ethnic-
ity, class, or any other) or societal arrangements are considered as natural and given.
The WHO Commission on Social Determinants of Health report (2010) succinctly
states that it is not diseases but social injustice that kill people on a grand scale.
Hence it is not inequality per se but how policies, politics, and social/cultural
arrangements act on unequal social positions of individuals that do matter in reduc-
ing health inequities in a society (Mishra 2018).
If the communitarian language of public health rests on fundamental values of
solidarity and social justice, the evidence on persistent health inequalities mandates
that the understanding of the population/public and the causes of inequalities must
be more nuanced taking into account the structural determinants of health. The
communitarian language also brings to the fore the question of agency and respon-
sibility in public health ethics – “it is always relevant to ask who has responsibility
for what?” (Cribb 2010:20). Considering the fact that public health as a collective
enterprise needs to draw on multiple stakeholders involving the government, com-
munity, NGOs, corporate social responsibility, private companies (the roles of some
of these stakeholders has become more prominent in the recent times), the ethical
question of shared responsibility is much more complex in public health than in a
clinical setting that has the practitioners and patients as the center of interactions.
Apart from the population/community orientation of public health, the mandate
of public health to address the causes of ill-health, disability, and injury thus address-
ing the structural and social determinants of health is an important point of depar-
ture from clinical medicine (Mann 1997; Gostin 2001; Anand et al. 2004; WHO
2010). The tensions between a narrow (health care, morbidity, mortality) and broad
conception of health (addressing causes of ill-health to create conditions for healthy
communities) thus between health and health care is age-old but continues to be
relevant from the perspective of public health ethics (Gostin 2001; Cribb 2005,
2007, 2010). Though these conceptions are not mutually exclusive (health care is
critical to public health), confining public health to provision of health care alone
would be ethically problematic. Beginning with the Black Report of the UK in 1980
followed by many others including the recent WHO Commission on Social
Determinants of Health as well as the social science literature, there has been a rich
body of theoretical and empirical work to suggest that addressing social determi-
nants of health is critical to create the conditions conducive to make people healthy.
In fact the recent literature has expanded the understanding of social determinants
of health itself and discusses about actions that could possibly address such deter-
minants whether it is gender-based violence or unresponsive health systems (Mishra
2018; Nambiar and Muralidharan 2018; Navarro 2009; Samuelsen et al. 2013;
Farmer et al. 2006; to name a few). The mandate of public health itself, thus,
demands an inter-sectoral and multidisciplinary approach where provision of health
is beyond the health sector/health system alone unlike provision of medical care in
the field of medicine. From this mandate, public health ethics rests on a societal
understanding of public health that upholds values of equity, rights, and justice and
locates health necessarily in the larger social, political, and economic arrangements
that promote/protect/prohibit health. Hence public health ethics may have a
6 A. Mishra and K. Subbiah

h­ istorical legacy in medical and bioethics but expands its scope and orientation to
include understanding of communities, health systems, global health, and environ-
mental justice (Beauchamp 1999; Kass 2004; Cribb 2010). Power is central to such
understanding (Rogers 2006). This “social turn” (Cribb 2005) is a critical point of
departure for delineating the field of public health ethics.
Unlike clinical medicine, public health is an eclectic and evolving field of inquiry.
The interdisciplinary orientations of public health have been more systematically
developed in the recent times through conceptualizing the field of health policy and
systems research (HPSR). Breaking itself away from a techno-managerial approach
of mainstream public health, HPSR reinstates and reinforces the societal and politi-
cal understanding of policies and practices in public health (WHO Alliance 2007;
Ghaffar et al. 2012). Social sciences have played a major role in shaping HPSR
(Gilson 2012; Sheikh et al. 2011; Mishra 2013). Its implications for public health
ethics are manifold. Social science perspectives not only thicken our understanding
of actors, contexts, and processes but problematize the framing of public health
issues themselves arguing that “the ways in which public health problems and solu-
tions are constructed may reinforce certain moralizing discourses, may alter the
distribution of health experience whether narrowly or broadly conceived, or may
produce or reproduce patterns of discrimination or stigmatization. Critical social
science provides powerful tools to help expose and illuminate these dangers and for
this reason, enriches ethical reasoning” (Cribb 2010:28). Such perspectives thus
extend the ethical inquiry to include not only to ask if public health interventions are
fairly distributed but why this particular intervention and processes of production,
consideration of evidence, and decision-making. Chapter 3 in this volume addresses
this question of framing of program design and evaluation in the context of plurality
of knowledge and evidence. HPSR thus extends and expands ethical issues and
modes of approaching them beyond the conventional ethics of clinical medicine or
even research ethics establishing the need for appropriate guidelines for HPSR work
(Luyckx et al. 2017; Pratt et al. 2017; Gopichandran et al. 2016). As Luyckx et al.
(2017) argue, HPSR sets its work in “real-world” contexts, contrasted with a clinic
setting addressing single disease entity, and hence cannot have research protocols
that are only about individual autonomy, consent, and balancing risks and benefits
rather need to consider protecting participants from exploitation, responsibility, and
accountability of researcher in building local research capacity, preventing risks of
exacerbating inequality during the course of research, addressing ancillary needs,
etc. Hence guidelines for review of research under HPSR cannot follow conven-
tional guidelines for biomedical research. Some of these tensions in the ethics com-
mittees’ reviews of HPSR as well other issues are discussed in Chap. 6 in this
volume.
This does not mean that the seminal ethical guidelines in health research and care
are insignificant to the discussion of public health ethics. The last 75 years have
been foundational in laying the road for the ethical accountability and responsibility
we share collectively as the human race toward better health and well-being.
However, locating public health issues and ethics better has also been pivotal in
helping us evaluate whether established codes require revisiting in the changed
1 Locating Public Health Ethics 7

annals of time, culture, vulnerability, and participatory representation specifically in

the context of the mandate and goals of public health practice. The Nuremberg Code
in 1947 and the 1964 Declaration of Helsinki (Porter and Venkatapuram 2012) com-
menced the key requirement of collective responsibility through two crucial dimen-
sions: (a) highlighting the accountability of medicine, research, experimentation,
rights, information, and consent in health and (b) acknowledging the need for clear
guidelines in health-care provision and service. This journey in turn facilitated the
inclusion of other crucial milestones in ethical principles, including the principles
approach that gave increasing credence to autonomy, beneficence, non-maleficence,
and justice to all people in a health system. The birth of “bioethics” in the 1960s and
1970s has important lessons for public health ethics. Its contributions to the areas of
ethics of health promotion, resource allocation, and the societal rights vs individual
liberties to justice and access to care specifically emanating from HIV/AIDS poli-
cies and interventions have continued to be relevant for public health discussions.
Bioethics’ inroads into the ethical issues at stake in the use of different kinds of
medical/biotechnology, organ donations, and other invasive medical practices have
been critical (Schicktanz et al. 2010; Kass 2004). While bioethics continues to
remain critical in guiding ethical processes of biomedical research, public health
scholars have identified the limitations of its applications to public health research
and practice. The last two decades or so have witnessed the emergence of emphasis
on more comprehensive health-care reforms, sharper engagement with health
inequality, focus on the relational angles of rights and ethics, and explicitly speak-
ing the language of public and health – eventually coining the currently common
and firm phrase indicating a distinct field of inquiry of public health ethics (Porter
and Venkatapuram 2012; Kass 2004; Beauchamp and Steinbock 1999). Though bio-
ethics continues to expand its thematic inquiry, some of the larger concerns with this
field are the individualized orientation (obligations of physicians and protecting
patients’ rights, individual autonomy of research participants in biomedical experi-
ments), overreliance on universal codes/guidelines and perhaps inadequate attention
to societal and political arrangements that explain conditions conducive or obstruct-
ing health of the population. Speaking of the need for a “new ethics” for public’s
health, Beauchamp and Steinbook (1999:ix) argue how public health ethics must
raise fundamental political questions including but not limited to “What is the
meaning and scope of community and the balance between the market and the pub-
lic realm in today’s modern liberal society which is so highly individualistic? Does
a strong public health policy require a rethinking of the current belief that the mar-
ket ought to be dominant in most domains to assure an adequate standard of living
for all and a high rate of growth?”. Kass (2004) expands this line of thinking to state
that in the current scenario of globalization, public health ethics must confront
global public health and justice, thus asking questions about the role of national
governments vis-à-vis the richer countries to the global poor, the data on health
equity in alternative political and economic arrangements, role of global actors, and
advocacy strategies to further global public health and justice. Feminist bioethics, in
fact, has played an important role in offering a critique of the masculine generic
8 A. Mishra and K. Subbiah

“human subject” of bioethics and explicating the analysis of social structures,

power, and gender in ethics (Rawlinson 2001).
Thus even as an offshoot of medical and bioethics, public health ethics has
sought to establish a niche that emanates from the goal of public health emphasizing
the population orientation of health (interrogating the public and health more criti-
cally), multidisciplinary orientation, and a more societal and political analytical lens
to understand health, health inequalities, and outcomes. It has sought to not only
reorient ethical lens but has expanded the nature of ethical inquiry to address the
rather messy and complex issues in the public’s health. The current climate of “con-
tinuing global need for public health action to address population-level health prob-
lems, the ongoing lack of public health infrastructures and poor environmental
health in many places in the world, the growing health inequalities between rich and
poor and growing health risks due to climate change, population movement, ageing,
antimicrobial resistance and overconsumption” has only reinforced the growth of
the public health ethics field of inquiry (Verweij and Dawson 2018:1). This distinc-
tiveness however does not suggest exclusive boundaries between bioethics (and for
that matter medical ethics) and public health ethics as many issues are overlapping.
For example, the issues of antibiotic resistance and thinking of possible pharmaceu-
tical innovations would be a theme for both these fields (Verweij and Dawson 2018).
As Cribb (2010) argues, many such issues in the realm of bioethics need to be
addressed through a public health lens.

Doing Public Health Ethics

Public health as a perspective and as an applied field cannot afford to engage with
ethics in an abstract philosophical discussion of what is right and wrong. Public
health practitioners are confronted with ethical issues and dilemmas in their every-
day practice that need to be addressed and resolved and decisions need to be made
that are clearly informed by ethical reasoning. Public health ethics is necessarily a
field of applied ethics.
As discussed in the aforesaid sections, due to the nature of public health enter-
prise, the existing guidelines on medical and bioethics cannot simply be exported
and applied. Further, public health practice involves a range of domains including
policy making, program design, implementation, monitoring and evaluation, sur-
veillance, research (using different research methodologies), communication, and
advocacy. The boundaries between research and practice or policy and practice are
blurred. Consequently international research ethics protocols have limited applica-
tions in these wide-ranging components of public health practice. In order to address
these gaps, several frameworks have been developed to facilitate ethical analysis of
public health issues (Kass 2001; Roberts and Reich 2002; Childress et al. 2002). For
example, Kass (2001) offers a six-step framework that could help public health pro-
fessionals analyze ethical implications of interventions, policy measures, program,
etc. Childress et al. (2002), on the other hand, lay out moral considerations includ-
1 Locating Public Health Ethics 9

ing effectiveness, proportionality, necessity, least infringement, and public justifica-

tion as relevant to public health. While frameworks have certainly helped to build
ethical thinking appropriate to public health, concern has been raised in terms of
potential rigidity in trying to address myriad ethical challenges in different settings
and contexts (Cribb 2010). In this regard, constructing a philosophically informed
reflective framework has been proposed as one way of doing public health ethics
(ibid). Four major philosophical frameworks have influenced the public health eth-
ics discussions. These include utilitarianism (or consequentialism), liberalism, com-
munitarianism, and more recently feminism (Roberts and Reich 2002; Cribb 2010;
Holland 2015; Rogers 2006). These theories have been evoked to address some of
the central issues in public health ethics around equity and effectiveness, individual
rights/freedom vs community benefits. “The construction of this kind of philosophi-
cally informed framework for reflection on public health ethics is crucial to the
development of the discipline. Without it, public health ethics degenerates into a
trade in intuitions about health, freedom and community” (Cribb 2010:43). More
recently, there has been sharper and critical engagement with these theoretical posi-
tions in eliciting nuanced applications of these principles and instruments in address-
ing ethical issues in public health policies and program implementation and
evaluations (Brock 2004; Anand and Hanson 2004; Kamm 2004; Allmark et al.
2010; Holland 2015). Brock (2004), for example, raises ten issues around equity in
the cost-effectiveness approach to allocation of resources informed by the utilitarian
approach. These include pertinent issues around the standardized measurements like
DALY (Disability Adjusted Life Year), QALY (Quality Adjusted Life Year) to ask if
all QALYs count equally, what costs and benefits should count in cost-effective
analysis of health programs, what priority should be given to the sickest or the worst
off, the conflict between fair chances and best outcomes, etc. The efforts in these
works have been to explicate the subtleties of ethical issues and challenges keeping
in mind both the specific (efficiency, maximization profit, proportionality) and the
broader ethical principles (equity, solidarity, rights and freedom) and potential con-
flicts that may arise in any specific situations among these principles (Brock 2004).
Thus “… even if a consequentialist perspective was to be most prominent in public
health ethics, it may well be pluralist and hence much richer than an all-too-simple
focus on maximizing utility” (Verweij and Dawson 2018:1).
Another methodological discussion on doing public health ethics analysis is to
ask how could the principles used in biomedical ethics including respect for auton-
omy, beneficence (obligation to act for the benefit of others), non-maleficence (an
obligation not to inflict harm on others), and justice (fair, equitable) be helpful
(Beauchamp and Childress 2001). While a straightjacket application of these prin-
ciples is deeply problematic largely because of the nature of dilemmas in public
health, it is also argued that public health would greatly benefit from adapting these
principles (Upshur 2002; Cribb 2010). Upshur (2002), in this regard, adds the prin-
ciples of reciprocity and transparency that can address some of the core tensions in
public health in terms of obligations and responsibility of individuals and communi-
ties, processes of decision-making, and upholding procedural justice. Chapter 4 in
this volume adapts the key principles in biomedical research to apply an ethical lens
10 A. Mishra and K. Subbiah

to the design of public health programs and successfully demonstrates such an

adaptation.
Social sciences (specifically sociology, anthropology) have contributed a great
deal in unpacking the interpretations and applications of ethical principles in health
research (Harper 2007; Kleinman 1999; Desclux 2008; Riesman 2005; Posel and
Ross 2014; Minocha 2013 to cite a few). This literature offers us two important les-
sons that are relevant to the methodology of doing public health ethics. Firstly, these
strongly argue for an “ethics-in context” understanding and applications of ethical
principles pointing toward the limitations of a standardized set of universal guide-
lines in international health research (that are suited for biomedical research).
Research in several contexts shows how informed consent (evoked to respect indi-
vidual autonomy and choice) has different interpretations. Speaking in the context
of South Africa, De Varies and Henley (2014) argue how the decision-making pro-
cess is based on discussions between people along different levels of social hierar-
chies with different kinds of relations to the participant and hence operationalizing
the principle of autonomy (through informed consent) would require a contextual
understanding. Informed consent in contexts of community-based research unfolds
in different ways where community engagement and transparency (leading to the
consent process) are imperatives (Harper 2007; Banks et al. 2013). The spirit of
informed consent cannot be a regulated ethical mechanism but must be situated in
broader values of trust, reciprocity, transparency, and accountability of the research
process. Public health practice does not involve research alone not even one kind of
research (epidemiological or biomedical). It involves several other components
where the boundaries between these components are not categorical. Khanna (2015)
elaborates the complexities of the interpretation of the four cardinal principles of
bioethics in the context of community-based monitoring and planning (CBMP).
Such a public health intervention that involves several stakeholders including gov-
ernment health system, facilitating NGOs, local communities and other networks,
ethical issues about harm, risks, benefits, justice acquire different meanings as these
concepts need to traverse through the dynamic and different sets of power relation-
ships among these stakeholders. In community-based research, “who constitutes the
community” is important to interrogate and reflect to operationalize any ethical
principle (Madiwala 2009). Much of the attention to the “ethics in context” or
“embedded ethics” emanates from different research epistemologies involved in
health research. Ethical challenges drawing on from different research traditions
and epistemologies are hardly discussed, while all forms of research in health will-
ingly or unwillingly conform to the ethical approval following the dominant bio-
ethical principles and increasing regulated ethics culture. The need for such
conversations (though uneasy) within health research (public health/HPSR) is an
imperative (Posel and Ross 2014; Desclaux 2008). The research process in bioethics
assumes a certain form of sociality between researchers and researched – partici-
pants as the producers of knowledge. It thus ignores the fact that much of knowl-
edge production happens in inter-subjective negotiations and the nature of research
relationships is far from static (Harper 2007). In community-based participatory
action research, where the boundaries between researcher and researched is blurred,
1 Locating Public Health Ethics 11

ethical issues around partnership, accountability, collaborations, and community

rights become critical than mere eliciting informed consent from individuals.
Secondly, increasing deliberations on ethics in public health research suggest
that ethics is not about a one-off event of ethics approval. What is needed is “every-
day ethics” which “stresses the situated nature of ethics, with a focus on qualities of
character and responsibilities attaching to particular relationships (as opposed to the
articulation and implementation of abstract principles and rules” (Banks et al.
2013:263). This is reinforced saying “We should bring the question of ethics – too
often relegated to a one-off aspect of the research process to something that suffuses
all we do as practicing anthropologists” (Harper 2007:2241). What is needed hence
is not about how to take informed consent or how to resolve a specific dilemma
alone but continuing deliberations on the ethical complexities among all those who
have a stake in the process. Ethical issues are sometimes not even discerned (assum-
ing that ethical approval necessarily renders the process of research, evaluation, or
monitoring ethical) and when identified, are rarely documented, deliberated, and
reflected. Posel and Ross (2014)’s book on Ethical Quandaries in Social Research
beautifully demonstrates the value of critical reflections and resolutions of the
messy tensions between and within guidelines, unpredictable nature of ethical
issues that may arise during the course of research, and difficult choices one has to
make between what is professionally required and what one does personally as an
ethical human being. Through a first-person narration, the essays in this book draw-
ing from different disciplines and research methodologies enrich our understanding
of ethics, ethical dilemmas, and possible resolutions. There are collective reso-
nances yet specificities depending on the nature of research theme, mode of research,
research setting, and aspect of research. Thus doing public health ethics necessarily
implies that it requires continuous reflections, deliberations, and resolutions (thus it
is not about a one-off exercise of only seeking approvals for conducting research or
eliciting informed consent) in every day practice of public health. Public health eth-
ics requires greater sensitivity to people and contexts (public health necessarily
involves a range of actors ranging from PRI at the local level to Global Health
Initiatives at global level). It thus does not entail a straightjacket universal applica-
tion of ethical guidelines rather a contextual understanding of its relevance through
shared understanding and dialogues.

The Indian Context

Public health ethics as a field of inquiry is at a nascent stage in India. The traditional
biomedical models of ethics have held precedence for a considerable period of time.
A lot of attention has been devoted to the ethics of medical practice and obligations
of health professionals (professional ethics). This has become critical in a context
where 80% of the outpatient care in India is catered by the private sector. Thus cor-
ruption, over-prescription, overdiagnosis, and high cost of treatment leading to high
out-of-pocket expenditure in seeking health-care services in the private health
12 A. Mishra and K. Subbiah

sector (accompanied by a crumbling public health system and weak regulation of

the private sector) have been brought to the fore as the moral failure of the Indian
health sector (Barua and Pandav 2011; Gadre and Shukla 2016; Mazumdar 2015;
Nagral 2014; Sengupta and Nundy 2005; Barik and Thorat 2015; Ghosh 2011 to
name a few). While India certainly has had its successes in terms of increase in life
expectancy, eradication of small pox and more recently polio, and reversing the
incidence of HIV/AIDS, the health of the population is marked by persistent inequi-
ties by region (rural/urban, different states), religion, caste, class, gender, and ethnic
communities (Sundari and Gaitonde 2018; Baru et al. 2012; Balrajana and Selvaraja
2011; Sen et al. 2007). The WHO Commission on Social Determinants of Health
and the rich literature in social science indicate that it is not availability of health
care but structural determinants of health including bad politics, poor policies, and
unfair economic arrangements that explain such inequities (WHO 2010). Economic/
political and social arrangements that prioritize and promote (or inhibit) health, as
Beauchamp and Steinbock (1999) suggests, are at the heart of public health ethics.
The developmental model in postcolonial India has privileged industrial/economic
growth for a long time neglecting investing in social sectors including education and
health landing itself in a situation of “uncertain glory” as Drez and Sen (2015) term
it. The role of the developmental state becomes important in a context where health
is not a constitutionally mandated right. The increasing role of the private sector and
the more individualized model of health care (depending on ability to pay) have not
been a coincidence but a result of long neglect of the public health system (Rao
2017). With a burgeoning for profit private sector, engaging with them meaningfully
in national public health programs hence continues to be critical (Hess et al. 2010;
Udwadia et al. 2010; Uplekar et al. 2001).
India is home to more than 30 disease control programs, the implementation of
which is inconsistent across states and fraught with challenges. While many of these
challenges are dubbed as implementation failures, it is argued that an ethical lens is
warranted in order to strengthen the impact and outcome of the Revised National
Tuberculosis Control Program (RNTCP) (Porter and Ogden 1999; Babu et al. 2014;
Ogden et al. 1999; Narayan 1999; Zachariah et al. 2012). These studies have con-
sidered a number of issues including the language (control, defaulters, and its impli-
cation) used in the program, methods of case detection and estimation of prevalence
and incidence, delimiting lens of a biomedical model of controlling the disease,
need for an equity lens to understand burden and access, importance of the cultural
context in the experience of diseases, and accessing treatment as well the larger
political context where RNTCP is located within an otherwise under-resourced pub-
lic health system and its implications. As stated earlier, this is one of the early pro-
grams where the role of private sector has been seriously considered and
experimented upon with mixed experiences (Pradhan 2011; Dewan et al. 2006;
Kielmann et al. 2014). While discussions on ethical issues on few programs like
RNTCP and immunization have received attention, it is increasingly being acknowl-
edged that an ethical lens to the framing/design, implementation, scaling up, moni-
toring, and evaluation of public health programs is an imperative. While the
traditional bioethical principles can be adapted, the ethical inquiry needs to be
1 Locating Public Health Ethics 13

extended as discussed in Chap. 3 in this volume and in other studies (Khanna 2012,
2015; Gopichandran and Chetlapali 2012).
One of the key public platforms for discussion on ethics that has arisen over the
past decade is the in-country series of collaborative National Conferences in
Bioethics (NBC). These conferences have been instrumental in bringing together
individuals and institutions with varied interests, perspectives, and engagements in
both the biomedical and public health sectors within India, along with students and
young professionals. As stated in the first national conference in 2005, the rationale
of the NBCs is “to give a platform for the various debates in the ethics movement
within the country and to give an impetus to the process of scaling up of the nascent
bioethics movement” (Ramanathan et al. 2006:27).
Some of the subjects these conferences have brought into focus over the last 10
years are reflective and indicative of the necessary attention health ethics has gained
in the country. The Indian Journal of Medical Ethics (IJME) has hosted these
National Bioethics Conferences since 2005 with subnational collaborators and part-
ners. IJME continues to be a journal and portal that discusses several emerging
aspects related to what can traditionally be defined as medical ethics as well as that
of bioethics. The themes in the NBCs series have ranged from ethical challenges in
health in an era of globalization, moral and ethical imperatives of health-care tech-
nologies, governance of health care, ethics and regulatory challenges in health
research, integrity in health care and research, etc.
These efforts have been pioneering in the spotlight they threw on the need for a
more synchronized and informed ethics movement in the health sector. Also, for the
first time, it brought together a very diverse set of professionals within the field of
health such as educators, researchers, academics, health-care providers, program/
project managers, and implementers from various organizations across the country.
The Centre for Studies in Ethics and Rights (CSER) under the Anusandhan Trust
commenced the same year (2005) when the NBC series began. The CSER was set
up to provide a long-term research program in ethics first as an independent center
and subsequently as a part of the trust itself. Between IJME journalistic and
conference-­based efforts and CSER, there has been real progress in bringing the
subject of bioethics to the discussion table among health practitioners. However,
while both efforts have made significant contribution to bioethics, the focused atten-
tion on the ever-expanding list of issues within public health ethics still has much to
be desired. While several ethical dilemmas in public health ethics are considered in
these efforts, their objectives tend to focus on health-care provision and providers,
health research, and agendas. While in many ways these subjects continue to form
the fulcrum of the debates, the time has come for concurrent concentration on the
wider net of ethical inquiry public health necessitates. For this, we need forums that
would do the same for public health ethics and practice with greater engagement of
social science disciplines. What is also critically missing are the discussions on
pluralism (as a value and practice) and the ethical issues at the construction of evi-
dence, efficacy, mainstreaming, revitalization of “traditional” systems of medicine
and community-based health knowledge, and their practitioners. The last quarter of
2018 will see the 14th World Congress of Bioethics being held for the first time in
14 A. Mishra and K. Subbiah

India. The “Health for All” theme in the conference is indicative of the conscious
steps toward universality and integration in the Indian health scenario. As it is of the
change, the bioethics movement has sparked for a more constructive integration
between public health ethics and bioethics movements and practitioners. Large-­
scale and transnational future forums such as these will be pivotal both for locating,
planning, and executing new directions in ethical inquiry and engagement in all
aspects of public health practice. Some of the interesting discussions around ethical
issues at the intersections of bioethics and public health ethics have come from
feminist scholars. Their work on commercial surrogacy, family planning program,
reproductive rights, and evaluation of women’s health programs has enriched the
discussion of public health ethics (Sarojini et al. 2015; Sarojini and Bhagianadh
2017; Khanna 2012; Khanna and Subasri 2014). Feminist approaches have sought
to reorient bioethics to engage with gender and power in more nuanced ways.
There are silences on the ethical dilemmas and challenges in public health more
by default than by design. While most practitioners face ethical dilemmas routinely
in their work, the tendency is to respond on a case-by-case basis and with the aid
of informal in-house consultations and deliberations due to several constraints. The
reasons for this are more often practical. Time and resource constraints, dearth of
easily accessible venues for collaborative dialogue, lack of standardized guidelines,
applicability of adapted guidelines, and institutional restrictions often determine
transparent consultation. These silences indirectly create inconsistencies in the
development of institutional protocols, few opportunities to share what could be of
significant relevance to each other, fear factor to consequences, and a reactionary
rather than a proactive set of skills in routine public health practice. A practitioner
can move to a role of enablement only when there are open recourses to identify and
articulate gaps in providing that support to others. It is imperative that such expres-
sions can occur without apprehensions of adverse consequences to oneself, one’s
capability, and one’s practice. The availability of authentic and transparent mecha-
nisms to break these silences will create more empowered spaces for ethics to per-
meate all processes and outcomes of public health practice.
Recently the need for integrating ethics into the public health education pro-
grams has been strongly felt. While the number of public health training programs
and institutions continues to expand, a survey of the curriculum and pedagogy of
these programs shows that ethics training is sorely missing (Pati et al. 2014). Ethics
cannot be reduced to a module alone but must be integrated explicitly and intention-
ally to the curriculum; further, the training of public health ethics can not be limited
to medical professionals. Public health encompasses a large number of stakehold-
ers, and capacity-building programs need to reach out to these varied stakeholders.
Innovative programs are the need of the hour to impart such training so that both
young professionals and those in-service professionals could benefit from such a
training. Chapter 10 in this volume discusses what kind of curriculum and pedagogy
might help to nurture an ethical lens to public health practice.
1 Locating Public Health Ethics 15

Way Forward

Rothstein (2012:27) in an editorial titled “The future of public health” succinctly

concludes “As long as society needs public health, it will also need public health
ethics to identify the interests at stake, weigh alternatives, consider consequences,
and help ensure that the benefits and burdens of public health interventions are dis-
tributed equitably across society”. Public health ethics, as the chapter discusses, is
distinct though sharing a historical legacy with medicine and bioethics. The distinc-
tiveness emanates from the goals of public health and the nature of the academic
field of inquiry (necessarily multidisciplinary) and practice that includes research,
policy making, program design, implementation and evaluation, screening, surveil-
lance, advocacy, and communication. As Beauchamp and Steinbock (1999) state,
doing public health is not a technical activity, but it is about doing social justice.
Ethics hence is at the heart of what we, as public health practitioners, do. Ethics in
public health practice liberates itself from both a purely philosophical engagement
with ethics and prescriptive and regulatory nature of ethics (assuming it to be the
prerogative of the ethics committee experts). This has made ethics discussion iso-
lated and fragmented. In fact, ongoing research and practice in HPSR has important
contributions to make to the discussion of public health ethics, but at this stage it is
yet to be integrated into this discussion. Public heath ethics demands ethics of the
everyday practice and by all practitioners. The methodology of doing public health
ethics demands a critical and reflective lens in the everyday practice that is continu-
ous and resolved through individual and collective deliberations. Careful training
programs hence need to be designed to address such demands of public health eth-
ics. While select efforts are already underway in different contexts, India is yet to
catch up. The last decade or so has witnessed an explicit engagement with public
health ethics in outlining its imperative and the nature of inquiry; this chapter (along
with the book) is a modest contribution to this conversation. It has an added signifi-
cance in the context of India which is at a cross roads of sitting on its “uncertain
glory” with consistent economic growth with inequitable health outcomes. If India
is committed to create conditions for production of health and healthy communities,
ethical considerations would go a long way in such an enterprise.

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Chapter 2
Public Health Rights and Ethics: Conflicts,
Contestations and Expanding Horizons

Edward Premdas Pinto

Abstract This chapter seeks to critically address the interface of ethics and public
health rights. The dialectics of the interface of public health rights, interchangeably
used as social right to healthcare (SRHC) and ethics, are marked by dilemmas,
conflicts and contestations. The constitutional ambiguities in the articulation of
SRHC on the one hand and the crisis of public healthcare on the other have further
confounded such ambiguities that have resulted in gross systemic and individual
violations of citizens’ dignity and wellbeing. This paper aims to (1) introduce the
concept of rights in relation to ethics in public health discourse; (2) familiarise with
the debates, dilemmas and contestations in the interface of rights and ethics; and (3)
broaden the horizons of ethical framework in practice. The efforts of the civil soci-
ety in India in foregrounding such ethical-moral argument are used to exemplify
and argue for the dimension of social citizenship and rights as an inviolable con-
stituent of the emerging public health ethics. Such terrain, however, is beset with
challenges with contestations, dilemmas and conflicts, even as it is dynamic and
ever expanding.

Introduction

Why do we need to speak of rights alongside ethics in and of public health? Is there
a right to public healthcare? How do rights and public health/care relate to each
other? How and where is ethics located in this interface? These questions are central
to discussing the interface of public healthcare and rights, specifically in the context
of India.
Ethical analysis of public health practices has highlighted the paradoxes and
ethical dilemmas that public health practice encounters. These include perspectives
between liberalism and egalitarianism, approaches of utilitarianism and individual
specificities or those which are universal and relativist (Roberts and Reich 2002).

E. Premdas Pinto (*)

Centre for Health and Social Justice, New Delhi, India

© Springer Nature Singapore Pte Ltd. 2018 21

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_2
22 E. Premdas Pinto

The strong relationship between ethics and public health and their linkages with
global health and justice have already been substantially discussed (Callahan and
Jennings 2002; Childress et al. 2002; Kass 2004). This chapter focuses on public
health practice from the perspectives of the constituents that form the goal of public
or population health, namely, health and wellbeing of citizens and communities.
Such arena of interface wherein ethical dilemmas, conflicts and contestations exist
depicts an unequal exchange of power between public health as a discipline and
system of health services – often paternalistic and patronaged by the power of the
State and its intentions – and citizens/communities frequently unguarded and unpro-
tected in the process of seeking or accessing public healthcare services.
Foregrounding ethics in such an interface, this chapter intends to (1) introduce the
concept of rights in relation to ethics in public health discourse; (2) familiarise with
the debates, dilemmas and contestations in the interface of rights and ethics; and (3)
broaden the horizons of ethical framework in public health practice.
The scope of public health is wide and undefined and includes various social-­
economic-­cultural-political dimensions of policies and practices. The frame of ref-
erence for discussion in this paper is limited to allopathic healthcare/services
(preventive, promotive, curative and rehabilitative) accessed by the ‘public’ and
includes both the State and privately provisioned services. Section one on social
citizenship, rights and ethics discusses the theoretical framework of social citizen-
ship as foregrounding public healthcare and rights; Section two on systemic dimen-
sions of public health rights discusses the dual dimension of public health rights,
viz. social arrangements for healthcare and the balance of power in a triadic rela-
tionship of the State, healthcare providers and citizens; in Section three the crisis of
public healthcare and rights is discussed in the context of India; and the last section
foregrounds the critical edge of ethics to navigate through the contestations, dilem-
mas and conflicts in such socio-political contexts as that characterise India.

Social Citizenship, Rights and Ethics

Rights and Ethics

The ideas of citizenship and civil society have been central to the modern political
thought, indispensable to the concepts of social rights, and together they bring into
focus the relationship of the individual with the State (Turner 2000). Rights and
duties and legal, social and political entitlements form the core of citizenship con-
tent. Citizenship denoted here, nonetheless, is not limited only to the legal citizen-
ship of a nation-State but encompasses a multidimensional perspective – viz.
democratic (Stewart 1995), civil-political and social citizenship (Marshal and
Bottomore 1992). Democratic citizenship refers to a shared membership of a politi-
cal community, civil liberties element relates to the individual freedom, and the
political component is indicative of the participation in the exercise of political
power. The dimension of social citizenship is much broader and includes the whole
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 23

range ‘from the right to a modicum of economic welfare and security to the right to
share to the full in the social heritage and to live the life of a civilized being accord-
ing to the standards prevailing in the society’ (Marshal and Bottomore 1992:30).
In feudal societies as well as in authoritarian regimes, people are considered
beneficiaries or subjects. It is only in the context of liberal democracies the idea of
citizenship exists and that rights can be spoken of. However, even in democracies
such as India, the power asymmetry between citizens and other actors continues
despite the policy articulations and legal provisions, which compromises and limits
the power and rights of citizens. In several arenas of social rights, as that in health-
care, such constitutional or policy provisions do not even exist, and often laws and
constitutional frameworks fail citizens due to their inadequacies and gaps, compel-
ling citizens to agitate for such provisions. Citizenship, therefore, is conceived as
active and dynamic and denotes citizens as active political actors (Turner 1990:221,
2000). The framework of rights, therefore, foregrounds itself as the medium through
which citizens express their claim to citizenship, resist the overpowering State and
other actors and stake their claim for equality and dignity. The framework and con-
cepts of rights that are fundamental to citizenship originate in the ethical-moral
discourses. This paper argues that ethics forms the foundation of rights and, in their
interface, holds the balance of power in advancing social citizenship.

Social Right to Health and Public Healthcare

The discourse on rights identifies at least five different types of rights: personal
rights (life, liberty, security, property, conscience); legal rights (due process, equal
protection under the law); political rights (participation, suffrage, assembly); social
and economic rights (standard of living, employment, healthcare, education, nutri-
tion); and collective rights (ethnic self-determination, minority rights) (Gauri 2004;
Gauri and Brinks 2008). Rights are also categorised as negative rights and positive
rights. Negative rights are those where the State is restricted from interfering into
the personal liberties of individual human lives, and the positive rights call for a
proactive intervention into providing social rights to citizens. Health and healthcare
belong to the genre of positive rights. Summarising the debates, Gauri (2004:467)
argues that fulfilment of all rights, especially the social rights, require ‘protection
and aid from the entity from whom rights are claimed, and that a reasonably effective
and well-funded state is a sine qua non for all rights’.
The idea of social rights which includes public healthcare is an integral com-
ponent of the social citizenship. They imply ‘an absolute right to a certain stan-
dard of civilisation which is conditioned only on the discharge of the general
duties of citizenship’ (Marshal and Bottomore 1992:36). The closest interrela-
tionship between citizenship and public healthcare can be traced to social rights
theories which became one of the core themes in the post-war Keynesian con-
struct of a welfare State. During the mid-twentieth century, in the post-depression
era, the Keynesian model provided a theoretical framework to the idea of welfare
24 E. Premdas Pinto

State. Healthcare is conceptualised as a social right and an inextricable compo-

nent of social citizenship. Redden (2002:356) elaborates the close association of
healthcare and citizenship narrative:
It is undeniable, however, that health care is relevant to citizenship and is often debated in
the language of rights. The tension or balance between individual liberty (rights and free-
doms) and collective welfare is the substance of citizenship. Thus, health care (as distribu-
tion, provision, and access) is an issue of citizenship.

Public health including healthcare closely relates to the dimensions of social

citizenship, and it binds the ideas of public health aimed at the wellbeing of popula-
tions and rights of citizens. However, as a discipline, public health itself is often
expert led and tends to be technocratic and follows a top-down model of decision-
making. With such an approach, the State exhibits its paternalistic character, and
citizens are often rendered passive entities divested of citizenship, as demonstrated
in the Poor Law in England, for example. The Poor Law treated the claims of the
poor, not as the integral part of the rights of citizens but as an alternative to them – as
claims which could be met only if the claimants ceased to be citizens in any true
sense of the word which is called ‘divorce of social rights from the status of citizen-
ship’ as it was extended to women, destitute and paupers who were not considered
citizens (Marshall and Bottomore 1992).
Public healthcare itself, therefore, has the propensity to be the contested terrain
for compromising citizens’ autonomy and agency in decision-making and participa-
tion. Ethics, thus, attains centrality in our discourse as arguing for the active and
dynamic social citizenship, which respects autonomy of the citizen. Conceptually,
while the ethics framework provides the ground to challenge the paternalistic yet
hegemonic approaches of public health which tend to violate citizenship rights,
operationally public healthcare as a social right can only be available to citizens as
a mechanism embedded in the State policy. Institutional perspectives lend them-
selves to further unpack the contours of public health rights and their interface with
ethics in the process of realising SRHC.

Systemic Dimensions of Public Health Rights

Public healthcare is about distribution, provision and access to healthcare services,

and such a systemic dimension is inherent in the very understanding of public health
as a discipline which is defined as organised efforts as a society to ensure conditions
for people to be healthy.1 While conceiving public healthcare as a social right, ethics
perspective outlines the dual dimensions of this right, viz. establishment of an

1
Institute of medicine defined public health as “what we as a society do collectively to assure the
conditions in which people can be healthy” (IOM 1988); Turnock (2001) described public health
as the “collective effort to identify and address the unacceptable realities that result in preventable
and avoidable health outcomes, and it is the composite of efforts and activities carried out by
people committed to these ends” (Noland 2004).
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 25

accessible public healthcare system and balancing the unequal power relationship
by empowering health-seeking citizens, who are otherwise vulnerable vis-à-vis the
healthcare providers and medical profession.

Social Arrangements for Health and Healthcare

The Alma Ata Declaration in 1978 played a pivotal role in bringing the idea of
human rights into health and healthcare for the first time to provide a healthcare
vision which encapsulates the human rights perspective. It positioned health as part
of the development paradigm addressing the root causes of diseases in the social
conditions. In addition, it also proposed primary healthcare as fundamental to
human wellbeing and emphasised for universality and a set of social arrangements
for its availability (WHO and UNICEF 1978). Alma Ata Declaration embodies such
an integration of approaches and provides the primary health as the most basic
social arrangement of services. The World Health Organisation (2002) too endorsed
such an understanding of right to health as a ‘claim to a set of social arrangements -
norms, institutions, laws, and an enabling environment’ (p.11).
The International Covenant on Economic Social and Cultural Rights (ICESCR)
provides the operational and legal framework for such a social arrangement of
healthcare services as an inclusive right ‘to the enjoyment of a variety of facilities,
goods, services and conditions necessary for the realisation of the highest attainable
standard of health’ (UNOHCHR – CESCR 2000: Sects. 8, 9 & 11). Specifically,
concerning the public healthcare, General Comment 14 lays down the principles for
a system of healthcare organised based on the principles of availability, accessibility,
affordability, appropriateness and quality (Gen Comment 14).
Public healthcare with its inherent paternalistic outlook and the technocratic
power can potentially circumvent citizenship. Ethics perspective buttresses citizen-
ship by reinforcing that such social arrangements of public healthcare are delivered
not merely as services but primarily packaged as rights of citizens. Public health-
care system, thus, can be viewed as the canvas which provides for the interface
between citizens and the State or healthcare providers serving as the fulcrum of
balancing power where the citizens’ autonomy, dignity and rights are protected,
respected and fulfilled.

Public Health Rights as Balance of Power

Unlike a civil-political right, public health or healthcare is not a matter between citi-
zens and State alone. Public healthcare involves a complex relationship between
plurality of actors (such as medical profession and multitude of healthcare service
providers), hierarchies of healthcare and policymaking and implementing institu-
tions and an interface of the individuals with these institutions and providers.
26 E. Premdas Pinto

State

Regulation Provision
/financing

Private

Healthcare Citizens

Providers (Healthcare Recipients)

(Source: Adapted from Gauri and Brinks 2008:10)

Fig. 2.1 Institutional relationships in public health rights. (Source: Adapted from Gauri and
Brinks 2008:10)

The social citizenship foregrounded in SRHC or public health rights is a triangu-

lar complex relationship between the State, healthcare providers and citizens.
Figure 2.1 depicts the social citizenship navigated through the duties of various
actors and liberties and rights (social and economic rights) that arise for the citizens
(Gauri and Brinks 2008). Interface of three sets of actors, viz. State, healthcare pro-
viders and citizens (clients or patients, in the context of seeking healthcare), is the
key to understand SRHC. Each of the three key actors is constitutive of a plurality
of actors such as individuals, institutions, professional associations, government
service delivery systems and administrative bureaucracies located at various levels
of the central and State administrative jurisdictions. Similarly, the healthcare pro-
viders include a range of professionals, professional associations, private hospitals,
charitable institutions and corporate healthcare, diagnostic entities, corporate busi-
ness entities in healthcare, insurance providers and so on. Of all the actors, it is the
medical profession, which is an absolutely critical actor in the realisation of SRHC,
due to the critical power it wields in medical care. The citizens seeking healthcare
are overburdened with the onus of personally manoeuvring and negotiating both
with the State for claiming their health entitlements when they face challenges such
as medical negligence or face adversities at the hands of the healthcare providers.
This is because of the fact that the right to healthcare and the mechanisms of deliver-
ing such rights are not constitutionally defined nor legally protected vis-a-vis the
State. The liabilities of healthcare providers are not legally defined (e.g. patient
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 27

rights) in relation to the healthcare providers, most of whom are now located in the
predominantly unregulated private healthcare sector).
The relationship between the State and healthcare providers is expressed in terms
of regulation. In the absence of a singular regulatory authority, the varied issues of
regulation are operated by diverse authorities employing varied measures (Ayres
and Braithwaite 1991; Healy and Braithwaite 2006; Makai and Braithwaite 1992;
Sheikh et al. 2013). The relationship between the State and citizens is established
through the role of the State in healthcare provisioning, resource allocation/financ-
ing and production of human resource for health.
A third dimension is exhibited by the relationship between the healthcare provid-
ers and the citizens. Medicine focuses on treatment and cure of individual patients,
and physician-patient relationship is at the core of medicine or healthcare (Childress
et al. 2002). Medical profession and practitioners are seen as professionals and
exponents of different types of power. It is expressed in the control of medical pro-
fession (Gilson and Raphaely 2008; Friedson 1970). Similarly Illich (1977) argued
that the doctor’s power of discourse over illness serves as a means to perpetuate
their own interests. The medical practitioners tend to employ ‘negative power’ of
resistance against any regulation and also lack positive power of intellectual capital
and of contributing to policy process (Sheikh and Porter 2010).
This dimension is contentious, hardly defined by any policy, and consequently is
treated as a private law relationship in the domain of courts. In accordance with this
understanding, State does not interfere in these matters, and citizens themselves are
bound to enforce these obligations and are considered as private obligations. The
SRHC and its realisation will finally rest on the duties and liberties that extend
between healthcare providers and citizens (clients). These include patients’ claim
for compensation under law of tort, duty of the healthcare providers to safeguard
confidentiality, obtaining informed consent prior to the treatment and ethical and
moral requirements for medical practitioners to treat certain class of patients such
as rape victims, etc. Institutionalising rights of citizens, guaranteed through consti-
tutional and/or legal provisions, play a crucial role in such a balance of power. In the
triadic relationship of actors conceptualising health justice, citizens seeking health-
care are the most powerless entity as compared to the State and the medical profes-
sion. From an institutional and power perspective, health rights can be conceived as
balance of power through institutional rules. Young (1990:25 cited in Gauri and
Brinks 2008: 13) proposed that ‘rights are not possessions but institutionally defined
rules specifying what people can do in relation to one another’.
SRHC is not a right to set of properties, goods or services alone. It is redefining
the relationships of citizenship which will govern the enjoyment of the goods or
services. It is a claim to change the rules that govern the production and distribution
of all goods, services and relationships of healthcare. It is also establishing institu-
tional mechanisms and procedures by which the goods and services related to
healthcare can be redistributed equitably, which can be better described as health
justice.
28 E. Premdas Pinto

The claim to such a balance of power and the citizenship narratives in healthcare
have emanated largely from ethical-moral arguments of human rights, healthcare as
a special social good and as integral to social justice.
• The foundations of healthcare as a fundamental human right: The relationship
between a health service provider, primarily a doctor, and an individual (patient)
was characterised as a contract, and violations of such contract were redressed
using the law of contract and torts (Teitelbaum and Wilensky 2009). Beyond the
legal framework, human rights provides the ontological foundations for ground-
ing of right to health and healthcare as integral to the protection and promotion
of human dignity and ethics (Chapman 2015). Human rights articulate the scope
of SRHR as ‘the highest attainable standard of health’ and set down its character
as being made available to all without distinction of race, religion, political
belief, economic or social condition (UNOHCHR 1948:Article 25; UNOHCHR
1966:Article 12;WHO CSDH 2008).
• Mann et al. (1999) cogently articulates the mutually reinforcing dimensions of
public health and human rights, signifying their linkage, intersectionality and
overlapping boundaries. Historically medical ethics provided important ground-
ing for right to health initially; there is now a need felt for firmly considering
ethics in and of public health (Ruger 2006; Kass 2001, 2004). Human rights
outlines not only an ethical-moral framework for public health rights but also
provides the legal framework in the international human rights law that enables
the identification of the barriers and violations that exist in the design or imple-
mentation of health policies to the detriment of wellbeing of citizens. Besides, it
also provides a tool to articulate these violations such as the discrimination
against ethnic, religious and racial minorities, as well as exclusion of citizens on
account of gender, political opinion or immigration status from the benefits of
social rights or those factors that compromise or threaten the health and wellbe-
ing of large number of populations.
• Healthcare as a special social good: Health along with education is considered
as fundamental to exercise human agency as ill-health (disease) and ignorance
(lack of education) are argued to be barriers that deter human beings from exer-
cising agency to live a fully human life. Such basic requirements are explained
by Rawls (1971, 1999, 2001) as ‘primary goods’ and in Shuhe (1996) as ‘basic
needs’. Similarly Nussbaum (2000) and Sen (1980, 1982) explain it through the
concept of ‘capabilities’. Social rights, especially the right to health (and educa-
tion), are justified and argued for also on the philosophical ground of ‘human
dignity’. Social right to health is essential to live with human dignity in the mod-
ern and contemporary society, without being excluded from others and to relate
to fellow human beings. John Rawls formulates ‘self-respect’ as one of the core
primary goods, and health (and education) are construed as the social bases of
such a self-respect (1971, 2001).
• Structural inequalities, unequal health outcomes and consequent health inequali-
ties being a limitation on enjoying full citizenship are being analysed from con-
sidering health and healthcare as being different from other goods, and hence
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 29

their deprivation offends people more than other goods. Societal inequalities and
disparities undermine people’s capacity to function as free and equal citizens
(Daniels et al. 2004) leading to ill-health furthering jeopardising the realisation
of human capabilities (Sen 1999). Inequalities in health are integrally linked to
and are constitutive of people’s capacity to function (Anand et al. 2004). Ethics
perspectives and concepts such as ‘fairness in equality of opportunity’ (Rawls
2001; Scanlon 1973) and ‘freedom and capability’ (Sen 1999, 2002, 2004) have
augmented the argument of healthcare as a special social good needing special
political and economic consideration.
• Healthcare is an integral part of social justice: Ethics and social justice scholar-
ship has proposed healthcare to be considered ‘a special social good’ and an
integral part of equity and distributive justice (Daniels 1981). Among the classi-
fication of justice domains, viz. retributive justice (related to punishment of
crimes), compensatory justice (relating to compensating victims of wrongdo-
ing), and distributive justice (relating to sharing benefits and burdens), it is the
latter two that closely intersect with the idea of social justice (Winthrop 1978).
Distributive justice in public healthcare or conceptualising healthcare as part of
the justice framework envisages equitable distribution of healthcare infrastruc-
ture, services, healthcare professionals, resource allocation and the protection of
the rights of patients as well as various providers. Rawlsian framework of ‘fair-
ness in equal opportunities’ leads to providing a fair opportunity for every citi-
zen, in an equitable manner, to access healthcare and to have a fair chance to
enjoy happiness and wellbeing. The legal provisions for such a distribution
would be necessary but insufficient. The element of dignity and justice will be
realised only when the possibility of an equitable society and the equitable dis-
tribution of societal resources will happen.
With these critical perspectives, the next section will delve into the interface of
ethics and public health rights in the specific context of India.

Crisis of Public Healthcare and Rights in India

The analysis of the policy and operational contexts of healthcare in India strongly
allude to twin aspects of this crisis in public health rights, namely, the crisis of
public healthcare system and the crisis of right to SRHC (Desai and Chand 2007;
Qadeer 2011b; Qadeer & Council for Social Development (India), 2015; Rao
2005). These crises make a compelling argument for the vital role of public health
ethics in India.
The earliest discussions on the SRHC in the early 1990s emerged in the back-
drop of crisis of healthcare putting an uneven burden on citizens through out-of-­
pocket expenditure. This is a paradox even in the advanced economies such as the
USA (Roemer 1989; Chapman 1994; Mann et al. 1994, 1999). Such discussions
foregrounding the crisis of healthcare to a large number of indigent and poorer
30 E. Premdas Pinto

populations pitch in to argue for healthcare as at least a ‘quasi-public good’ to

counter-­positioning healthcare as ‘market good’. It argued for universal financial
access to health insurance2 (Karsten 1995).

Constitutional Ambiguity and Lacuna of Legal Protection

India does not have a well-articulated, constitutionally founded and direct social
right to healthcare in India. Social right to healthcare is ambiguously located in the
Constitution of India and is not a legally protected right in India. In India, the refer-
ences to public healthcare are derivative and indirect. The Constitution of India
reflects the contents as well as the spirit of the Universal Declaration of Human
Rights. However the debate and divide between civil-political and social rights are
inherent in its structure. The former are incorporated in Chap. III of the Constitution
as justiciable fundamental rights, while social rights which is an umbrella covering
SRHC are addressed indirectly by the Constitution and are broadly covered under
different sections of the Directive Principles of State Policy (DPSP).3 The latter are
nonjusticiable rights subject to progressive realisation. This division has serious
implications with respect to the justiciability of social rights in general, including
one of the most essential – the human right to the highest attainable standard of
health, including preventive, curative and rehabilitative medical care. The closest
reference to healthcare as articulated in Article 47 of the Constitution of India rec-
ognises the ‘duty of the State to raise the level of nutrition and the standard of living
and to improve public health’. Despite several judgements which have laid down
that healthcare is a fundamental human right, it has not impacted substantial consti-
tutional amendment to give effect to such jurisprudence.
The socio-political context of India, the constitutional scheme and the design of
the judicial system pose a composite challenge to the recognition of and redressal of
SRHC violations. There is a lack of recognition and constitutional expression of the
SRHC as it has been done in some of the modern constitutions.4 The expression of
public health and healthcare are patchy and are relegated to Chap. IV as incohesive

2
Subsequently, discussion on universal insurance and an adequate legal framework began in the
early 1990s, to be realised as Affordable Care Act (known as Obama Care), only after 15 years
(Jaffe 2012). The republicans again have started the process of whittling down this Act by tabling
amendments in 2017, indicating the political nature of SRHC of the marginalised.
3
39 (e) ‘health and strength of workers (...) are not abused ...’; 39(f): ‘that children are given oppor-
tunities and facilities to develop in a healthy manner..’; Article 41: ‘... securing the right to work,
to education and to public assistance in cases of unemployment, old age, sickness and disable-
ment...’; Article 42: ‘humane conditions of work and for maternity relief’; Article 43: ‘conditions
of work ensuring a decent standard of life...’
4
In South Africa’s constitution, for example, Sect. 27 on healthcare, food, water and social security
states (1) everyone has the right to have access to (a) healthcare services, including reproductive
healthcare (Constitution of South Africa 1996).
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 31

pieces, subjected to the limitation of nonjusticiability imposed by Article 37.5

Consequently, a number of issues on health policy, allocation of budgets, adequacy
of health programmes, the accountability of the healthcare system (including the
private healthcare system) and the duties and obligations of the State are without
any consistent constitutional direction. Besides, in the federal structure of the Indian
State recognised by the Constitution, public health and healthcare are classified as
State subjects, which makes cohesive policymaking a challenging task.
The relationship between the constitutional articulations on SRHC and guaran-
teed healthcare is ambiguous. Having an articulation of SRHC in the constitution
and in law is distinctly different from the State’s policy on public healthcare and
public spending on healthcare which is essential for the realisation of SRHC. The
research of Eleanor D. Kinney (2008) shows that 68 percent of countries have some
articulation of right to healthcare varying from having the intention of SRHC to
providing for an affirmative duty on the State to provide care. Her research indicates
that countries showing greatest constitutional commitment spend less than half as
much per capita on healthcare compared to countries with no formal constitutional
declarations on right to health and healthcare. Several multi-country studies on
social rights indicate that having a legal framework accentuates the possibilities for
citizens to articulate violations and stake claims for their rights.

Crisis in the Public Healthcare

Healthcare in India is currently in a critical state brought about by many years of

systematic underinvestment in the public health sector, lagging far behind compa-
rable countries such as Brazil and China. India already had a very low state invest-
ment in healthcare in 2004, which even after combining central and State spending
was less than 1% of the GDP (gross domestic product). The private contribution to
healthcare expenditure in 2004 was over 80%, most of which was out-of-pocket
expenses, pushing millions of people into poverty. The low investments in health
budgets led to erosion of public health infrastructure and an inadequate health work-
force with extremely poor training.
The National Rural Health Mission (NRHM) in 2005 was launched in the back-
drop of the iniquitous distribution of health services in rural areas as compared to the
urban areas and was expected to strengthen the rural health services. However, even
after a decade of NRHM which eventually was renamed as National Health Mission
(NHM) in 2014, extremely uneven picture of health facilities across India, especially
the EAG (Empowered Action Group) states, continues.6 NRHM in 2004 aimed at

5
Article 37 states: ‘The provisions contained in this Part shall not be enforceable by any court, but
the principles therein laid down are nevertheless fundamental in the governance of the country and
it shall be the duty of the State to apply these principles in making laws’.
6
The eight states with the poorest health indicators, namely, EAG states (Uttar Pradesh and
Uttarakhand, Madhya Pradesh and Chhattisgarh, Bihar and Jharkhand, Orissa, Rajasthan) and
32 E. Premdas Pinto

reducing the high costs of healthcare resulting from low public health financing
(NHSRC 2016). The out-of-pocket expenditure (including household payments for
private health insurance) as a percentage of total health expenditure is still high at
68% 7 (NHSRC 2016). Public health spending continues to be extremely low in India
at 1.2% (combined for centre and States) of the GDP which ranks India 143rd among
190 countries, among the lowest in the world (Parliament of India 2016, para 2.10).8
A starved and enfeebled public healthcare system is the fertile ground of the viola-
tions of human rights of citizens and a setback for their claim to citizenship.
This neglect of the public health system contributed to the growth of a flourish-
ing but unregulated private health sector. The State is increasingly seen to be abdi-
cating its constitutional responsibility for the healthcare of citizens. The increasing
privatisation, downsizing of the provisioning role of the State, non-regulation of the
expanding private-corporate healthcare sector and unaccountability of the medical
profession which is increasingly seen to be involved in unethical practices in pro-
moting the profiteering logic of corporate healthcare lend credence to such an
observation. In the wake of policy gaps and a weak political will to protect the
SRHC of citizens, civil society has used the core arguments of ethics to press for
right to healthcare as the fundamental right in India.
In India, various governments have pushed for healthcare as a business through
unstated policy intentions, confusingly couched language in the policy documents,
especially in the post-liberalisation era (Baru 2001, 2005). The National Health
Policy has used the language of health assurance instead of health rights. Similarly,

Assam (DLHS-4-IIPS 2014). The sub-health centres (SHCs), primary health centres (PHCs) and
community health centres (CHCs) are the backbone of citizens’ access to public healthcare in
India. However, even in 2016, crucial infrastructure remains incomplete despite the additional sup-
port of the NRHM: there is a shortfall of 35,110 SCs (20%), 6572 PHCs (22%) and 2220 CHCs
(30%) across the country as per the rural health statistics (RHS) 2016 (http://nhm.gov.in/nrhm-
components/health-systems-strengthening/infrastructure.html, seen on April 28, 2017). The
shocking lack of specialists in CHCs has been marked in the rural health statistics (RHS) 2016 as
a ‘huge shortfall’ of 83% physicians, 84% surgeons, 80% peadiatricians and 77% ob/gyn doctors.
A functioning OT is available for around half the CHCs in UP, MP and CG and even less in
Rajasthan and Orissa, while for Assam only 13% CHCs have a functioning OT. Assam has blood
storage in 23% of its CHCs, and Rajasthan comes a distance second at 13%. In all other states with
high rates of MMR, the percentage of CHCs with blood storage ranges from 2% (UP) to 8%
(Orissa).
7
In fact out of 192 countries ranked in terms of out-of-pocket expenditure as a percentage of total
health expenditure in 2014, India is placed at 183 just above neighbouring countries of Bangladesh
(187 rank) and Afghanistan (184 rank).
8
According to the National Health Accounts 2013–2014 (NHA), the government share of the total
health expenditure has gone up only from 23% to 29% in this decade. The union government
spends Rs 358 per capita for healthcare, while the State governments and union territories/local
bodies spend Rs 684 per capita (NHSRC 2016), public health spending in China (2.9% of the
GDP) and Brazil (4.1%). These insufficient changes over 10 years indicate that despite the NRHM,
the impoverishment faced by the people as a result of catastrophic health costs is very likely con-
tinuing. The inadequate budgetary allocations described above are distributed very unevenly
among different population categories, as the NHA 2013–2014 (NHSRC 2016, page 16)
indicates.
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 33

the National Rural Health Mission (NRHM) policy framework embedded within
itself space for private insurance, public private partnerships, etc. even as the docu-
ment spoke of health as a right (Government of India 2016; Ministry of Health and
Family Welfare 2017). The unregulated private sector is ripe with medical malprac-
tices, irrational practice of medicines, exploitation of patients and medical miscon-
duct (Gadre and Shukla 2016; Sivanandan 2016). The unethical practices in clinical
trials, violations in reproductive health rights such as coercive sterilisations of
women and the corruption involved in medical education with the connivance of the
Medical Council of India do illustrate the same with substantial evidence (Parliament
of India – Rajya Sabha 2012, 2016). The violations and character of the healthcare
system reflect the caste-class-patriarchal biases that typify the denial of healthcare
of the vulnerable populations en masse (Baru et al. 2010; Qadeer 2011a).
The result of the aforesaid scenario is palpable in the overall rising preventable
morbidity and mortality and reported cases of abuse including medical negligence.
These are violations of citizens’ rights at the individual and systemic level. For exam-
ple, communicable diseases contribute 28% of the entire disease burden (GOI 2017).
Among these, more than 3.5 million Indians are affected by Tuberculosis and malaria
which are often described as the diseases of the poor.9 Deaths of infant and children
under 5 years and maternal mortality, at a disproportionately high levels, along with
an unequal distribution of mortality and morbidity allude to grievous systemic viola-
tions. Such violations converted to absolute numbers is only a symptom of the greater
malaise that has affected the public health rights of citizens in India.10

9
Around 2.5 million people are estimated to be living with TB within India, about one-quarter of
the global burden of TB (GOI 2017a). TB is one of the leading causes of death in India today with
close to 5 lakh people dying in 1 year and 28 lakh cases detected in 2015 alone. India also has the
highest burden of malaria among the Southeast Asian countries: data from 2014 indicates there
were 1.1 million cases and 562 deaths due to malaria; however, in the last 10 years, total malaria
cases have declined by 42% (GOI 2016).
10
Approximately 12.5 lakh children under 5 years die every year whom an unfortunate 10 lakh die
even before their first birthday. Estimates of maternal mortality ratio (MMR) are now at 167 deaths
per 100,000 live births which translates to around 45,000 maternal deaths each year (Parliament of
India 2016, para 2.40) (NFHS-4, IIPS 2017). The deaths of women and children are not evenly
distributed across all states or all social groups, as studies have indicated. A child born to a sched-
uled tribe family has a 45% greater risk of dying in infancy compared to other social groups,
especially if the ST family is in a rural area. Such differentials are seen within and between states.
Maternal deaths among poorest women are reducing far more slowly than richer women who have
better access to emergency obstetric care. The data from NFHS-3 (IIPS 2007) indicated that there
are significant differences among women from the lowest and highest wealth quintiles in access to
basic maternal services such as comprehensive ante-natal care or skilled attendance at childbirth.
One-fourth of rural women are underweight (with a BMI of less than 18.5 kg/m) although the
national average has reduced from 36% to 23%, the proportion of women with anaemia has
remained static, going from 55% to 53% in 10 years, and even now, half the pregnant women in
the country are still anaemic. Comprehensive pregnancy care remains abysmal at 21% (NFHS-4
India Factsheet, IIPS 2017). This poor nutritional status of women in the reproductive age, coupled
with their early marriages and lack of contraception, creates a significant probability of high-risk
pregnancies in India.
34 E. Premdas Pinto

Hence to gauge the impact and realisation of SRHC for accentuating citizenship
through social citizenship, the existence of a public healthcare system supported by
a pro-citizen, pro-people public policy is important. Provisioning for rights includ-
ing right to healthcare and provisioning healthcare are two distinct features and are
impacted by political, social and economic context even beyond the formal laws and
constitutional articulations. Flood and Gross (2016:6) illustrate that ‘two systems
with similar rights provisions but different social/political systems... show dramatic
differences in the realization of health rights’.
As seen in Fig. 2.1, medical profession is integral to the realisation of SRHC. In
India, the ethical and moral decline of the medical profession looms large (Shukla
and Gadre 2016). It’s nexus with profiteering and private industries such as pharma-
ceuticals and diagnostics and failure to regulate the profession in the pretext of self-­
regulation has been widely debated in India (Baru and Diwate, 2015; Das et al.
2004; Parliament of India – Rajya Sabha 2012, 2016). The medical profession is a
significant actor both in the violations of patients’ rights and a barrier to the realisa-
tion of SRHC.
In the context of dual crises – both of the decline of public healthcare and lack of
constitutional protection – civil society has attempted to use the judicial powers to
elicit constitutional articulations and legal interpretations, which seem to have a
limited impact on the public healthcare system. In such and other continued efforts,
citizens have seen a ray of hope and have invoked ethics as the foothold to advocate
for public health rights.

 ights and Ethics Interface: Foregrounding Ethics for Public

R
Health Rights and Social Right to Healthcare

Marshall (1950) proposed social citizenship as an integral element of multidimen-

sional citizenship. Even after seven decades after this theory was propounded, the
idea of social citizenship has not received as much consideration as it requires. The
crisis of public health and healthcare in India and constitutional ambiguities in pro-
tecting the social right to healthcare of the marginalised in India compel the ethical
foregrounding to fortify citizenship. Social citizenship and the participation of citi-
zens in the democratic, economic and civil life through SRHC would imply framing
ethical arguments for a robust public healthcare system. Resisting the commodifica-
tion of health has an overriding importance (Flood and Gross 2016:452). Such a
process is however a contested arena and fraught with dilemmas and conflicts. In
the following section, this is elaborated.
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 35

Contestations, Dilemmas and Conflicts

Social rights in general and in health and healthcare took a while to emerge out of
the shadow of the politics that historically contested and constricted the discourse
on human rights. The civil-political rights vs. social rights divide of the Cold War
era is also summarised as the libertarian vs. egalitarian divide, and this has a special
bearing on the SRHC discourse.
The civil-political rights are considered first-generation rights, and the social
rights are considered second-generation rights. Both these enjoy a different status in
countries in addressing the violations arising from any of these. The dichotomy
between the understanding of human rights as indivisible-interdependent-universal,
and the divide between the civil-political rights and social rights11 in terms of justi-
ciability, has received far greater acknowledgement in the recent years (Coomans
and Maastricht 2006). There have been efforts to reinforce the unity of human rights
as illustrated in the Final Declaration of the Vienna World Conference on Human
Rights in 1993 which emphasised that ‘all human rights are universal, indivisible,
interdependent and interrelated’ (UNOHCHR 1993).
Roemer (1989) traces this fragmentation to the twofold approach in human
rights, i.e. libertarian and egalitarian, and traces its extension even in the discourse
on SRHC. The former, in general, stresses on choice of the individual for medical
treatment, while the latter focuses on access to healthcare of all citizens and distri-
bution of healthcare services. Another debate on health rights revolves around the
scope of rights, viz. right to health and right to healthcare. The underlying social
determinants are said to be the root cause of illness, and they relate to inequity and
structural inequalities and require adequate attention for the realisation of a mean-
ingful right health (Chapman 2010). The right to healthcare on the other hand
focuses on institutional arrangements, primarily for curative services.
Right to health and healthcare (as belonging to the domain of social rights) car-
ries this historical tension and legacy of this divide with inherent difficulties of
justiciability, enforcement and enjoyment of rights to health and healthcare. This
divide has resonance in the Indian constitution as civil-political rights are consid-
ered justiciable fundamental rights and the social rights which include SRHC is in
the domain of the DPSP, which is nonjusticiable. The implications of such a divide
can be gauged by the fact that social rights in general including healthcare have
taken longer duration to gain currency in the academic and policy discourses and
remained incohesive up to the early 1990s.
The late twentieth- and early twenty-first-century crises of social rights have
brought into focus the nature of citizenship and its various dimensions again. The
notion of welfare State, which is at the core of the social relationship as explained
by T. H. Marshal, has been shaken up due to overemphasis on market, the deteriora-
tion of the autonomy of the nation-State and the rise of the non-State actors. Social

11
In this paper, social rights is used for the sake of brevity to include and a mean by the expression
of the broader rights under social, economic and cultural rights.
36 E. Premdas Pinto

citizenship and SRHC face risks and restrictions on two counts. Firstly, political
theories of Marshal and others are located within the framework of welfare State,
and such a State is characterised as a ‘paternalistic State’. However, as the character
of the State changes, healthcare along with public health also suffers irreversible
blows as is experienced in the current economic policies and the neoliberal politics
that legitimises it. Secondly, irrespective of the nature of the State, citizens and
medical profession are placed in an imbalanced power relationship. Both these need
protection and balancing for the realisation of a fuller social citizenship. In glo-
balised economy, the global economic forces place constraint on the domestic econ-
omies of various countries, and economic rights supersede social rights. By contract,
healthcare as a public good could be very well related to the antithesis social rights
pose to market forces and market logic. ‘Social rights in their modern form imply
an invasion of contract by status, the subordination of market price to social justice,
the replacement of the free bargain by the declaration of rights’ (Marshal and
Bottomore 1992:38).
These two contesting paradigms reshaping the SRHC discourses marked the end
of the second millennium and the beginning of the third millennium. The dominant
paradigm positioned health system being ‘an instrument of maintaining the hege-
mony of the dominant social order’, and the alternative paradigm foregrounded the
possibility of being ‘an arena for asserting people’s claims for services and account-
ability, and hence people’s power’ (Shukla 2005). The latter view strongly endorses
SRHC as a fundamental human right and proposes a militant discourse and approach
to reclaim the public healthcare system. The right to health discourse also embodies
the language of ‘struggle for health and right to healthcare’. Paul Farmer sum-
marises this contention succinctly:
We thus find ourselves at crossroads: health care can be considered a commodity to be sold,
or it can be considered a basic social right. It cannot comfortably be considered both of
these at the same time. This, I believe is the great drama of medicine at the start of this
century. And this is the choice before all people of faith and good will in these dangerous
times. (Farmer 2003:175)

McGregor (2001) argues that the neoliberal policies marked by individualism,

free market via privatisation and deregulation have influenced the shaping of a
healthcare system which commoditises healthcare as a market good. He makes the
case for the need of an alternative approach that could bring dignity and a human
face to healthcare to broaden the understanding of healthcare and challenging the
neoliberal mindset. It is accepted that healthcare systems were one of the most
affected social security systems severely affecting SRHC. The weight of structural
adjustment programmes (SAP) was heavily imposed on cutting health spending and
imposition of user fees coupled with healthcare reforms which primarily empha-
sised privatisation of healthcare services fundamentally turning healthcare as a pur-
chasable commodity. Enforced by a new economic world order, ill-health is said to
further aggravate poverty and marginalisation (Kim 2000).
The import of the above-mentioned divide can be gauged in the barriers that citi-
zens and aggrieved patients feel in seeking justice in healthcare. Analysts have
2 Public Health Rights and Ethics: Conflicts, Contestations and Expanding Horizons 37

taken an institutional perspective to reposition SRHC as the outcome and interplay

of a triangular relationship between the State, healthcare providers and citizens.
This approach, arguably, goes beyond considering SRHC merely as goods and ser-
vices onto focusing on institutional rules that govern the production and distribution
of the social goods such as healthcare (Gauri and Brinks 2008:13).
The substantive justice is navigated through the instrumentality of procedural
justice. The analysis in this research denotes to several dimensions of the procedural
justice in health. In the following section, a critical appraisal is undertaken of the
mechanism of procedural justice whose intended outcome is SRHC or social
citizenship.
Violations of ethics protocols impacting the wellbeing and dignity of citizens occur
in the web of these complex relationships. As SRHC is not a legal protected social
right in India, challenging these power relationships happen on ethical-moral
grounds rather than legal grounds. As much of this undefined and is left to the chaos
of market forces, public health ethics vision potentially can provide the ethical pro-
tocols for the transformation of services into public health rights accentuating social
citizenship in India.

Expanding the Horizons of Thinking Public Health Ethics

The constitutionalisation of right to healthcare as a fundamental right and conse-

quently making provisions for healthcare and its various components through State
or under the stewardship of the State provide a much needed impetus to argue for
healthcare as a fundamental right (Biehl et al. 2016).
The repercussions of such a process are seen in realignment of the politics of the
State with the market, largely observed as the decline or dismantling of the welfare
State. It is noted that such developments signify not merely the influence of free
market over the State, but rather that ‘the State has realigned itself in relation to
capital (and in particular corporate capital) in such a way as to demonstrate that the
State and the market are not in competition’ (Veitch et al. 2012: 262). Marketisation
of public goods and services, as indicated in the marked shift of healthcare from
being considered a public good to a private good, is signifier of the increased mar-
ketisation of social life in areas which were hitherto considered public in the frame-
work of a welfare State. Such processes in healthcare are exemplified by
private-public partnerships, increased commercialisation in healthcare services and
promotion of unbridled corporate-business ventures in several related spheres such
as medical tourism, clinical trials, surrogacy and tertiary-specialty healthcare.
Regulatory measures are seldom driven by public welfare concern, and when reluc-
tantly undertaken by the State – quite often as a response to public outcry in the face
of grave violations of health rights – are marked by compromises that protect pri-
vate commercial interests. In the contemporary period, State primarily pursues laws
and regulatory policies not as public welfare entitlements, but rather, as part of a
complex web of private or ‘public-private’ economic relations.
38 E. Premdas Pinto

Conclusion

Rights, either can be founded on constitutional or legal frameworks or can emerge

from long-term patterns of public policy, whereby rights, though not formally artic-
ulated, are acknowledged and exist as de facto rights (Flood and Gross 2016).
Countries where SRHC is enjoyed the most are the ones which have a robust public
healthcare system based on a strong and long-term public health policy and without
explicit reference to health rights (Flood and Gross 2016:5). However, in countries
such as India, where neither a robust public healthcare system exists nor a constitu-
tional protection to public health rights, there is growing evidence for the increasing
violations of citizens’ wellbeing and dignity.
In the context of the Indian health scenario as discussed in this chapter, ethics
and moral framework could be effective in consolidating access to affordable and
quality healthcare. The domain of public healthcare is thronged with forces of com-
peting interests and contestations. In such circumstances, the role of ethics entails
creating political spaces for these debates and discourses, and in turn, influence
various institutions and policies to redefine these relationships. Such discourses can
address an array of issues including revision of policies that are violative of citizen
rights and implementation of programmes and devise mechanisms for accountabil-
ity for safeguarding SRHC. In the face of hostility, at best, it can attempt to make
such violations visible to the civil society and public health community around.
In a democracy, distributive justice links public health in general and healthcare
in particular to justice and rights (Edgren 1995; Qadeer and CSD 2015). Ethics
perspective in public healthcare identifies imbalance of power and the need to stress
on the less powerful and marginalised citizen’s personhood as a central theme.
Beyond the legal ambit, a strong ethics framework in public healthcare would be
able to consolidate the SRHC and public health rights of citizens. The emerging
public health ethics need to strongly foreground public health rights as an integral
element of such a discourse.

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 Part II
Ethics in Program Design,
Implementation, Evaluation
Chapter 3
Knowledge, Framing, and Ethics
in Programme Design and Evaluation

Suraj Jacob

Abstract This chapter will explore ethical issues surrounding the design and eval-
uation of public health programmes. For programme design, the chapter will argue
that programme choice often occurs with solutions already in mind and that these
solutions reflect “off-the-shelf” thinking (for instance, ubiquitous “training work-
shops”), implying little real “choice” in programme design. Further, at a broader
level, programme choice is influenced by implicit ideological and epistemological
positions that may be ethically dubious especially if they are not problematised and
made transparent. On programme evaluation, the chapter focuses on ethical aspects
of three key elements: participatory evaluation, the use of evaluation results and the
place of impact evaluation. The chapter concludes with a discussion of the role of
ethics in relation to epistemology. While it may be relatively uncontroversial to note
the problematic ethics of research that comes up short when benchmarked against
its own research / methodological paradigm, it is worth asking to what extent the
choice of research / methodological / epistemological paradigm is itself an ethical
one.

After independence, health policymaking in India gravitated to controlling infec-

tious diseases and family planning through a techno-managerial approach rather
than focusing on the primary health system (Amrith 2007).1 From the 1990s, public
health budgets were cut, private sector players encouraged, and a programmatic,
verticalised approach to disease control became a feature of government policy. Rao
(2017:21) notes: “Complex health problems were simplified into single-line techni-
cal solutions – DOTS [Directly Observed Treatment, Short Course] for
TB (Tuberculosis), immunization for infant mortality, early diagnosis and

1
This went against earlier attempts at an inclusive model emphasising community engagement and
environmental hygiene for positive health and wellbeing (for instance, see the ideas of the Bhore
Committee). There were also occasional (but failed) attempts at an integrated approach later on, for
instance, the National Health Policy of 1983.
S. Jacob (*)
Vidya Bhawan Society, Udaipur, India
Visiting Faculty, Azim Premji University, Bengaluru, India

© Springer Nature Singapore Pte Ltd. 2018 45

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_3
46 S. Jacob

distribution of chloroquine tablets for malaria, and cataract surgeries for blindness”.
Although many of these programmes were integrated into a broader platform from
2005 (National Rural Health Mission, later National Health Mission), health yoja-
nas (programmes) continue to be an important feature of policy. They target a vari-
ety of matters, such as institutionalised delivery (e.g. Janani Suraksha Yojana),
health insurance (e.g. Rashtriya Swasthya Bima Yojana or Yeshasvini), adolescent
health (Rashtriya Kishor Swasthya Karyakram), and so on.
In the backdrop of the importance of programmes in healthcare and health policy
in India, this chapter explores ethical issues surrounding the design and evaluation
of such programmes. In this chapter, a “programme” is taken to be an organised
effort to address a public health need. Programme “design” refers broadly to how a
public health approach is chosen and a programme constructed and justified with its
expected processes and impact specified.
The chapter highlights a common tendency to design programmes without seri-
ously problematising programme choice and assumptions, and it illustrates this
through a case study (Sect. “Programme choice and design”). Programme “evalua-
tion” refers broadly to the systematic investigation of the roll-out, processes and
impact of a programme. The chapter highlights participatory approaches to evalua-
tion (Sect. “Participatory and group-sensitive evaluation”), problematises the
emphasis on impact evaluation in most mainstream evaluations (Sect. “The place of
impact evaluation”), and explores what becomes of evaluation results (Sect. “Use of
evaluation results”). The presentation reveals that discussions of ethical issues in
public health programme design and evaluation inevitably confront the fundamental
question of knowledge construction and power, and the chapter concludes with
some thoughts on ethics and epistemology (Sect. “Conclusion”).

Programme Choice and Design

“Off-the-Shelf” Programmes

How do policymakers choose and construct programmes? A careful approach

would start with a wide-ranging and genuine “needs assessment” to identify the
nature of the need/problem and the context within which it is located. A given need/
problem can be potentially addressed in a variety of programmatic ways.
Nevertheless, in reality, programme choice often occurs with solutions already in
mind. Such solutions inevitably reflect “off-the-shelf” thinking rather than “out-of-
the-box” thinking – for instance, ubiquitous “training workshops” are a ready solu-
tion – implying little real choice in programme design.2 As Watkins et al. (2012:17)
note, in designing programmes often “needs” are conflated with solutions in terms
of inputs and activities, such as in the following statements: “What we really need

2
Further, where needs assessment is attempted, it is often reduced to a cursory “baseline survey”
generating descriptive statistics rather than deeper probing of the situation to construct an under-
standing of the “how” and the “why” of the need/problem.
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 47

is to hire more staff members”, “I need more resources”, “They need more train-
ing”. Rossi, et al. (2004:156) note:
The human service professions operate with repertoires of established modes and types of
intervention associated with their respective specialty areas. As a result, program design is
often principally a matter of configuring a variation of familiar “off the shelf” services into
a package that seems appropriate for a social problem without a close analysis of the match
between those services and the nature of the problem.

A careful approach would brainstorm with intended programme beneficiaries,

programme personnel, and others regarding different alternative solutions and their
corresponding requirements and implications. Consider, for instance, the policy
reaction to the tragic 2012 rape incident in Delhi (“Nirbhaya”) that set off a large
storm of protest. An immediate programmatic response by the government was to
try to establish “women police stations”.3 While this may or may not be an appropri-
ate response, it is not clear that needs were carefully articulated or alternative solu-
tions gauged. Ubiquitous public service messages are another example of
off-the-shelf thinking. In the context of family planning programme, Joseph (2004)
writes:
The Post & Telegraph Department made marriage greetings in attractive envelopes that
curtly said, “For happy married life please be in touch with the Family Welfare Centre”. In
the late ‘60s the government pleaded, “Two or Three Children...Then Stop”. When the fer-
tile ‘60s ended, the campaign cancelled the kind option of the third child. “We Two Ours
Two, Horn Ok Please,” the highway trucks began to say. But all that came to nothing.

The argument here is not that it was wrong to have such exhortative messages.
Rather, it is that the approach followed likely did not weigh alternative solutions in
a participatory manner, going instead for off-the-shelf solutions that probably had
limited impact.4 The question then is: why are programme choices and assumptions
not questioned more often? Part of it may be due to a disconnect between planners
and programme designers on the one hand and programme managers and imple-
menters on the other, and part of it may be due to a status quoist tendency (Kaplan
and Garrett 2005). Further, at a broader level, programme choice is influenced by
implicit ideological and epistemological positions that may be ethically dubious
especially if they are not problematised and made transparent. The subsection below
illustrates this in the context of a specific programme.

3
“All Delhi police stations to have women officers: Shinde”, Times of India, December 29, 2012;
“Only 442 women police stations across India: Police research data”, The Hindu, December 25,
2012.
4
More recently, the Health Ministry launched a “high-octane campaign with a three-in-one mes-
sage of family planning, child spacing, and safe sex practices” (“What’s the family plan”, The
Hindu, April 17, 2016).
48 S. Jacob

Case Study: Tamil Nadu Integrated Nutrition Project (TINP)

The Tamil Nadu Integrated Nutrition Project (TINP) emphasised nutrition educa-
tion, growth monitoring, and supplementary nutrition for pregnant and lactating
mothers as well as infants. It ran as a large-scale intervention (in about 20,000 vil-
lages) in Tamil Nadu state over a long period (phase I in the 1980s, phase II in much
of the 1990s, and phase III merging with the Integrated Child Development Service
programme from the late 1990s). The World Bank considered the programme
impactful/successful (World Bank 1994) and designed a similar programme in
Bangladesh, the Bangladesh Integrated Nutrition Project (BINP) (Cartwright and
Hardie 2012; White and Masset 2007).
Consider the logic (and implicit ethics) of programme choice in TINP. The pro-
gramme was put in place after extensive studies and needs assessments as well as
discussions of the state government with the World Bank. Heaver (2002:7) notes:
TINP I was designed following a 1970s analysis, the Tamil Nadu Nutrition Study, which
was probably the most elaborate nutrition study undertaken in the developing world by that
time. In addition to carrying out anthropometry, it studied the consumption aspects of nutri-
tion, food production and processing, and the relationship between income and employ-
ment growth and nutrition in the state. The study’s broad scope led to wide-ranging nutrition
strategy discussions between the state government and the Bank, and in turn to the initial
identification of a complex, multi-sectoral project with components for growth monitoring,
behavioral change, food supplementation, health care, food production, and food process-
ing. In the course of a 16-month dialogue during project preparation, this initial broad menu
of activities was reduced to the more limited TINP focus on growth promotion and improve-
ment of maternal and child health services.

TINP was designed keeping in mind results from previous studies of nutrition in
Tamil Nadu. Specifically, the focus on child nutrition came from studies of the
strong relationship between child mortality and child nutrition. The focus on preg-
nant and lactating women and pre-school children also came from previous studies.
The focus on nutrition education for mothers and growth monitoring of infants
came from studies showing that child malnutrition occurred in many families with
income levels that could ensure adequate diet. And the focus on supplementary
feeding (i.e. only for children below a specified growth threshold and only until they
crossed that threshold) was to help reduce dependency on the programme as well as
to sharpen focus.5 Targeting specific women and children, as well as emphasising
supplementary rather than regular feeding, also helped with managerial and finan-
cial viability.
Based on fieldwork exploring how TINP played out in four caste communities,
Sridhar (2008, 2010) provides empirical evidence to question assumptions partly
based on which the programme was designed – for instance, that specific b­ ehavioural

5
That the programme was designed explicitly for supplementary rather than regular feeding cannot
seriously be considered an ethical problem – feeding was not designed to directly redress diet or
calorie problems and with carefully justified reasons. Further, in practice, programme personnel
did not withhold food from children who expressed hunger even when they did not qualify based
on the threshold (Sridhar 2008).
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 49

practices related to breast-feeding, washing, and balanced diet were obstacles to

better nutrition and health and that behavioural change could occur through appro-
priate counselling and education. Sridhar (2010:128) points out instances not of
ignorance and inappropriate or even uncaring practices but rather of structural limi-
tations created by poverty and the labour market: “a tribal woman was told that she
should breastfeed her child. However, she noted that she was unable to comply with
this advice during the day because she was a daily labourer”. Further, structural
limitations were not just external to the household. Sridhar reports that in a majority
of instances, women did not have control over household expenditure. Although
many respondents knew about the importance of protein, vegetables, and a balanced
diet, there was a substantial problem of diversion of household income by males for
alcohol consumption. Overall, Sridhar (2010:130–1) notes:
… women thus have knowledge about childcare, yet are constrained by lack of control over
income and time. Women often mentioned lack of time, money, or control over household
expenditure to explain why their child was not healthy. For example, when a woman
stopped breastfeeding before the World Health Organization’s recommended twelve
months period, it was usually because she had limited time, insufficient milk, or because
she was sick. Many of the low caste and tribal women had to work in the fields all day and
upon returning felt that since they had been separated for more than eight hours from their
child, their breasts were engorged and the milk had become sour. Instead of asking the
health workers for more formula, out of fear of being chided, mothers would hide the fact
that they were not breastfeeding. As a result, they would end up giving the baby sugar water,
or cow or water buffalo milk. (van Hollen 2003)

From the perspective of ethics, what are we to make of this structural critique?
Despite the exemplary due diligence displayed by programme designers in crafting
programme components in response to what was known and understood about mal-
nutrition in Tamil Nadu, given the training and inclinations of the economists and
public health experts at the World Bank and in the Tamil Nadu government, the fact
is that programme designers were operating with particular biomedical and health
economics models. Sridhar (2010:123) argues:
Within the Bank, the discipline of economics is hegemonic... an economic approach reduces
problems, such as nutrition, to their core elements so that the professional expertise can
digest them and prescribe solutions. … So the Bank framed nutrition using biomedical and
economic inputs because it ultimately had to construct a problem that its own instruments
could address. The Bank is in the lending business. It makes time-bound, repayable loans.
Any Bank actions have to fit within the overall Bank goal of lending for growth.

The economic-biomedical approach did not sufficiently acknowledge the socio-­

economic positionality and structural disadvantage of the women and children that
TINP was designed to address. In fact, a nonstructural approach implicitly creates a
“framework of blame” where “a mother is admonished by health workers who sim-
ply assume that an undernourished child is the result of a mother’s inadequacy”
(Sridhar 2010:131). If this happens, it is inherently contradictory and ironic from an
ethical perspective since a programme intended to improve the wellbeing of women
and children may actually end up reducing the wellbeing of some.
50 S. Jacob

Programme Evaluation

For programme evaluation, the chapter explores three aspects: participatory evalua-
tion, the place of impact evaluation and the use of evaluation results.

Participatory and Group-Sensitive Evaluation

One principle of humanistic research and development practice, which extends to

evaluation, is that of genuine, democratic engagement with individuals and groups
encompassed by the research/evaluation. This extends both to data collection and to
analysis – for instance, the participatory techniques spearheaded by Robert
Chambers and associates (Chambers 2007) – as well as adopting an equity-sensitive
lens to explore impact processes and outcomes associated with an intervention.
Crishna (2006) notes four dimensions of participatory evaluation: those involved in
the programme have some control over evaluation processes, evaluation objectives
are jointly set by them, difficulties faced within this group are addressed as part of
the evaluation, and the process is collectively empowering.
There is an insightful literature on community-based health planning, monitor-
ing, and evaluation in India (for instance, Khanna 2013; Shukla et al. 2014).
Chouinard (2013:238) distinguishes the sensibility of technocratic and participatory
approaches:
Evaluation, as it is envisioned in the current governance context, is intended to serve pri-
marily an instrumental role… as a way to legitimize government activities, ensure cost-­
effectiveness, and enhance managerial decision making… The contrast between approaches
that are more sensitive and responsive to community needs, such as participatory or col-
laborative approaches to evaluation, and accountability-driven technocratic approaches, is
stark… [The mainstream, technocratic] approach to evaluation may well fall short of cap-
turing the range of local views, contextualized meanings, and culturally relevant perspec-
tives that are increasingly relevant today, and that participatory and collaborative approaches
to evaluations are intended to capture.

Besides sensibility, such approaches are more explicit about seeing interven-
tion processes and outcomes from a perspective of justice (Khanna 2013). For
instance, equity-focused evaluation focuses on “assessments of what works and
what does not work to reduce inequity” with an emphasis on “difficult-to-reach
socially marginalized groups” (UNICEF 2011:9). Gender-sensitive evaluation is a
particularly important aspect, especially in a development context where gender-
related catch phrases have become the norm.6 Emphasising specifics such as wom-
en’s control over their own bodies, political and legal spaces, private and public

6
Govinda (2012) notes several: “analysing gender inequality”, “promoting gender equity”, “main-
streaming gender”, “engendering development”, and “gender sensitisation”.
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 51

resources, and labour and income, gender-sensitive evaluation highlights the pro-
cesses and extent to which an intervention changes and transforms gender rela-
tions (Chigateri and Saha 2016). UN Women (2015) notes:
Gender-responsive evaluation has two essential elements: what the evaluation examines
and how it is undertaken. It assesses the degree to which gender and power relationships—
including structural and other causes that give rise to inequities, discrimination and unfair
power relations, change as a result of an intervention using a process that is inclusive, par-
ticipatory and respectful of all stakeholders (rights holders and duty bearers).

Besides gender, and more generally, evaluation has sought to take perspectives
related to human rights (Kemp and Vanclay 2013), social impact (Esteves et al.
2012) and environmental impact (Morgan 2012). In the Indian context, besides
class and gender, analyses based on social groups structured by caste, tribe and
religion are particularly important from an equity perspective.

The Place of Impact Evaluation

Programme evaluation is about understanding how a programme unfolds (including

in comparison with original expectations based on planning and the theory of
change), why it unfolds as it does, and with what consequences (intended and unin-
tended). The latter component – namely, consequences of programme roll-out or
“impact evaluation” – has gained increased importance in recent times relative to
other components such as “process evaluation”. Since it is about an intervention and
its consequences, impact evaluation has attracted the attention of those working on
causal methodology in positivist social science. This literature has produced inter-
esting methodological innovations centred around the logic of a “treatment group”
and its counterfactual (“control group”) where difference across otherwise “equiva-
lent groups” is interpreted as the causal impact of the intervention (Cook and
Campbell 1979; Dunning 2012; Duflo et al. 2007).
Not only is evaluation increasingly focused on impact evaluation, but impact
evaluation is itself increasingly focused on the experimental RCT (randomised con-
trolled trial or clinical trial) model, to which I turn below.

Equipoise and the Randomised Controlled Trial

An important ethical challenge of RCTs is that a potentially beneficial intervention

is given to one group of individuals and deliberately denied to another group.7 And
the ethical justification is that RCTs can potentially generate new knowledge that
can be used for future decision-making regarding programmes and policies that can
improve wellbeing. That is, a necessary condition to ethically justify an RCT is that

7
Here, I am not taking up the more obvious ethical issue of doing harm, even unintentionally, as in
the famous Stanford prison experiment (Zimbardo 1973).
52 S. Jacob

it should reduce uncertainty about whether and how much a programme is impact-
ful; this is referred to as “equipoise” (Freedman 1987).8
There are prominent studies in which the equipoise principle was violated, for
instance, the Tuskegee Study of Untreated Syphilis (1932–1972) in which poor
African-American men with untreated syphilis were followed even after the effec-
tiveness of penicillin was established and it became widely available (Caplan
2001).9 In such situations, sometimes a counterfactual ethical justification/argument
is made: if the study participants were unlikely to have received the known effective
treatment (in this case, penicillin) in the absence of the study, then the study by itself
is not compromised ethically. However, there are in fact well-known ethical proto-
cols – importantly, the Helsinki Declaration originating in 1964 (Riis 2003) – that
require implementation of the “established effective intervention” in control groups
(CIOMS 2002, Guideline 11). Such protocols protect vulnerable populations and
especially those in the developing world in today’s globalised research context
(Angell 1997).
There is a further ethical nuance to consider. Outside of clinical medicine per se,
and more properly in the domain of public health and social policy, many RCTs are
conducted primarily to understand the extent of impact rather than to gauge whether
or not the corresponding intervention will have positive impact. For instance, in the
case of an RCT involving a vaccination camp or provision of midday meals, the
logic of equipoise and established effective intervention are not at work – unlike,
say, with a potential curative drug. Rather, the vaccination camp or midday meal
RCT seeks primarily to gauge the extent of impact (on health, nutrition, and other
indicators) in specific socio-economic and geographical contexts long after the clin-
ical or health “value” of such interventions has been established. For instance,
Banerjee et al. (2010) frame their RCT on vaccination camps by noting explicitly

8
Freedman (1987:141) notes that equipoise is “a state of genuine uncertainty … regarding the
comparative therapeutic merits of each arm in a trial”. For him, “clinical equipoise” is when there
is “genuine uncertainty” on the part of the “expert medical community – not necessarily on the part
of the individual investigator –about the preferred treatment”. However, this is not without its crit-
ics. For instance, Miller and Brody (2003: 20) critique equipoise for viewing “clinical trials
through a therapeutic lens”. Relatedly, Clayton (1982) distinguishes between an “individual ethic”
(avoid harm, provide equal benefit to each individual) and a “collective ethic” (acquire new knowl-
edge so that individuals may benefit in the future). In this rendering, RCTs can be justified ethically
when the latter counters the former.
While equipoise is about uncertainty regarding knowledge, there is also the related matter of
clinical trials with methodological failures that have ethical consequences. May (1975: 25) notes
that “one of the most serious ethical problems in clinical research is that of placing subjects at risk
of injury, discomfort, or inconvenience in experiments where there are too few subjects for valid
results, too many subjects for the point to be established, or an improperly designed random or
double-blind procedure”.
9
The study had other ethical violations as well, for instance, deliberate deception of participants.
Subsequently, a larger literature and consensus have developed around ethical dos and don’ts
regarding research on human subjects, and these have been institutionalised in specific research
contexts (for instance, in Institutional Review Boards).
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 53

that “[i]mmunisation is a highly cost effective way of improving survival in children

in developing countries” and that yet there is little consensus on the best (institu-
tional or other) way for implementing it. In other words, equipoise is invoked, but it
is “implementation equipoise” – to coin a related term – and not clinical
equipoise.10
Unfortunately, the world of “what works” in policy implementation is sparse in
settled, context-appropriate knowledge. For instance, in the case of vaccination,
Banerjee et al. (2010) find that small material incentives may be more cost-effective
than simply improving reliable supply. Yet we know little about what aspects of the
specific context of the RCT (NGO intervention among poor tribal villagers of south-
ern Rajasthan) may have contributed to the results and whether and how the results
carry over to other contexts (nontribal villages even in the same region or peri-urban
areas). Indeed, the absence of a sizeable literature on the context-specific nature of
implementation (Konkipudi and Jacob 2017), and therefore also impact, provides a
relatively strong case for implementation equipoise even though the literature does
not articulate it in such terms. This holds in broader terms for all “pilot projects”
where an intervention is tested out on some subset of a target population.

Humanistic Critique

RCTs and other interventions with an evaluative component (such as pilot projects)
sometimes tend to have other characteristics that have attracted critiques. One cri-
tique relates to the ethics of experimentation that disproportionately falls on the
marginalised, of which the Tuskegee study is an example. Reddy (2012: 68) points
out:
… the relative disorganisation of poor people and poor communities, which makes it pos-
sible to experiment upon them without facing much resistance… It would very likely be
politically unpalatable to provide a recognisable benefit randomly to middle-class or upper-­
class individuals or communities, and, at a minimum, to do so would involve complex
political negotiation.

A second critique is that evaluation-centric interventions tend to take a non-­

humanistic, engineering approach where intervenors stand in a privileged position
outside the community/system in which the intervention occurs, as suggested by the
TINP case study. Sridhar (2010:128) suggests that programme instructions to front-
line workers took an economic-biomedical approach that did not encourage auton-
omy or empathy in programme personnel: “at the front line, the community workers
did not have enough time to discuss caring practices with women… more emphasis
[was] placed on producing written educational materials than on actually speaking
to women about health and nutrition”.

10
However, this has come in for criticism. For instance, Glewwe et al. (2012) report an RCT gaug-
ing the extent to which students with eyesight problems do better at school if they wear corrective
eyeglasses. For a critique from the perspective of clinical equipoise, see Ziliak and Teather-Posadas
(2016).
54 S. Jacob

Further, the overall approach of TINP may also have tended to view programme
personnel, especially frontline workers, as cogs in the intervention-evaluation
machinery. Sridhar (2010:127) notes: “The health workers routinely collected mas-
sive amounts of data, usually not fully understanding why they were doing it or
what the information would be used for”. Similarly, Mishra (2014:966) notes that
frontline health workers in Odisha “ensured that all state health services were
moulded to accommodate local aetiologies of illness and remedies… However,
these efforts were confined to the community space and never shared with senior
health officials, lest this might be seen as promoting quackery”.

Impact Evaluation: Causation Without the “Why”

The discussion regarding ethical complexities with RCTs and the non-humanistic
approach of evaluation-centric interventions more generally is not applicable to
impact evaluation approaches that are not intervention-based. Such approaches,
often called natural experiments or quasi-experiments, have ethical and logistical
advantages over experimental/intervention-based approaches (Cook and Campbell
1979; Dunning 2012). Nevertheless, both intervention-based and quasi-­experimental
approaches can be critiqued for an epistemology that is ethically problematic, as
discussed below.
In impact evaluation, impact is “the positive and negative, intended and unin-
tended, direct and indirect, primary and secondary effects produced by an interven-
tion” (definition from the OECD Development Assistance Committee; see Rogers
2012). Almost the entire focus on impact evaluation is to legitimately estimate the
size/extent of impact that can be causally attributed to an intervention. Given this,
experimental or quasi-experimental evaluation cannot explain how impact occurs.
Addressing the “how” question would require understanding the processes and con-
texts within which interventions play out. Nevertheless, positivist methodologies of
impact evaluation are framed explicitly around their ability to produce estimates of
the causal impact of an intervention on an outcome. The irony is that these
approaches claim to estimate empirical causal impact without actually empirically
explaining why the impact is what it is estimated to be – in other words, causality
which does not address the “why”!
Why is it important for evaluation to understand impact processes – how and
why a particular impact obtains – rather than only estimate causal impact? Dalkin
et al. (2015) note:
…it is necessary to establish what goes on in the system that connects its various inputs and
outputs… In pharmacology, the term ‘mechanism of action’ refers to the specific biochemi-
cal interaction through which a drug substance acts on the body to generate its curative
effect. Programme evaluators do not suppose that CCTV (the intervention) causes a fall in
crime rates (the outcome). It does so, when it does so, by persuading potential perpetrators
of increased risks of detection (the mechanism). In all cases, science delves into the ‘black
box’.
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 55

Impact evaluation studies typically specify the theoretical mechanism(s) linking

intervention and projected outcomes, but even if it is empirically established that the
outcomes occurred as projected, it does not sufficiently establish the validity of the
proposed theoretical mechanism as empirical causal explanation (Woodward 2017).
Rather, what is needed is empirical tracing out of the process(es) through which the
intervention in a particular context produced the outcomes causally attributed to it
(Jacob et al. 2015). As Smith et al. (2002:72) note, we often intuitively assume pro-
cesses without empirically establishing them:
It makes intuitive sense that better working conditions would improve productivity. In the
same way it is clear that street lighting or closed-circuit television (CCTV) should work by
increasing surveillability. Plague reduction should work by drowning witches, and fever
should be reduced by the extraction of overheated blood. We have been too ready to assume
that how crime prevention should work is the way crime prevention does work.

Biomedical studies show the enormous variation in impact and point the way to
the importance of understanding process and context. For instance, studies based on
mice and meant to throw light on human physiology may not even be generalisable
to all mice contexts since it turns out that the specific type of mouse used in labora-
tory experiments (Black 6) is “a teenaged, alcoholic couch potato with a weakened
immune system, and he might be a little hard of hearing” (Engber 2011). In the case
of TINP, based on its perceived success (George et al. 1993; World Bank 1994), the
World Bank conceived and funded a similarly massive programme in Bangladesh.
Nevertheless, BINP has been judged to be a failure even apart from implementation
weaknesses (White and Masset 2007; World Bank 2005). Cartwright and Hardie
(2012) note that an important contextual difference – and one that programme
designers and implementers ignored because of their a-contextual approach to
“scaling up” – was that in Tamil Nadu decisions on infant nutrition revolve around
the mother, but in Bangladesh they revolve around the paternal grandmother. This
implies that programmes such as BINP focused on changing the knowledge and
behaviour of mothers are less likely to create large positive impact.
Writing about public health in India, Prashanth et al. (2013:36–37) note that the
challenge is about “focusing on ‘how’ interventions to improve health services
work in addition to understanding if they work”. They scrutinise all published eval-
uations of public health programmes in India over a 5-year period and note that few
trace processes of impact and indeed only 34 of 93 even reported the context within
which the intervention produced the outcomes that were being reported. They
explicitly note a sad reality in the literature (Prashanth et al. 2013:44): “In spite of
several health and related social initiatives taken up under the National Rural Health
Mission (NRHM) and various national-level schemes in the country, the policy-­
relevant question what worked for whom and under what conditions remains largely
unanswered”.
Although impact evaluation studies seldom undertake process tracing, in fact,
the impact evaluation approach offers a potentially excellent starting point for doing
so, namely the “heterogeneity effect”: estimated causal impact of an intervention is
56 S. Jacob

an average that may be distributed widely.11 Deaton (2010:430) notes: “heterogene-

ity is not a technical problem calling for an econometric solution but a reflection of
the fact that we have not started on our proper business, which is trying to under-
stand what is going on”. If the estimated average impact is relatively higher among
some individuals or groups compared to others, it forms an excellent starting point
to explore causal processes and contexts for explaining why this is so. Consider the
impact evaluation study by Lim et al. (2010) of the Janani Suraksha Yojana (JSY),
a conditional cash transfer scheme for promoting institutional delivery. The study
uses a quasi-experimental methodology to establish that on average JSY reduced
perinatal and neonatal mortality rate. However, it also finds considerable heteroge-
neity around this average based on region, socio-economic group, and so on.
Prashanth et al. (2013:39) note:
It concludes that conditional cash transfer schemes such as JSY, through incentivizing insti-
tutional delivery, could ‘somehow’ improve particular health outcomes. However, crucial
information for policymakers and decision-makers at district and sub-district level is related
to why there were differences among beneficiaries, and why within districts some women
did not avail the scheme, or did not benefit from the scheme in spite of availing the scheme.

Local specifics of caste and class matter enormously for public health processes.
Mishra (2014:968) notes that in one Odisha village, “villagers even refused to lead
us to the ASHA’s residence and later complained about how indifferent and inactive
an ASHA she was. We learned that this ASHA’s recruitment had been controversial,
as she was married to a rich contractor and a converted Christian, pitting her as
someone who is privileged and unfit to relate to the concerns of the villagers”. More
generally, Mishra (2014:961) notes:
Existing literature on global programmatic experiences with integration of health services
tend to approach delivery of services as a technical and mechanistic process … The focus
on supply-side health system factors, though important, assumes that community demand
relies unproblematically on providers delivering services…. Ethnographic evidence sug-
gests that the demand/uptake of health services is linked to a host of factors, such as the
community’s perceived vulnerability to a specific illness for which the health service is
offered, previous experiences with other state health services, modes of health communica-
tion, interaction with health workers and broader political identities and perceptions of the
state by the community…

Woolcock (2013:230) critiques inconsistency in approach to rigour in the typical

impact evaluation approach:
… having expended enormous effort and resources in procuring a clean estimate of a proj-
ect’s impact, and having successfully defended the finding under vigorous questioning at
professional seminars and review sessions, the standards for inferring that similar results
can be expected elsewhere or when ‘scaled up’ suddenly drop away markedly. The ‘rigorous
result’, if ‘significantly positive’, translates all too quickly into implicit or explicit claims

11
Interestingly, participatory and group-sensitive evaluation approaches naturally take process and
context more in their stride than do conventional approaches: “Equity-focused evaluations pay
particular attention to process and contextual analysis, while conventional impact evaluation
designs use a pre-test/post-test comparison group design, which does not study the processes
through which interventions are implemented nor the context in which they operate” (UNICEF
2011:9–10). See also Batliwala and Pittman (2010).
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 57

that the intervention now has the status of a veritable ‘best practice’, the very ‘rigor’ of ‘the
evidence’ invoked to promote or defend the project’s introduction into a novel (perhaps
highly uncertain) context, wherein it is confidently assumed that it will also now ‘work’.

Finally, and quite apart from what impact evaluation cannot tell us – although
implicitly insisting it does so – because of absence of empirical process tracing,
impact evaluation approaches are also limited as they cannot tackle several impor-
tant questions, viz. those not amenable to construction of relevant control groups.
Reddy (2012:63) notes that “[t]hese include questions related to the structure and
dynamics of markets, governmental institutions, macroeconomic policies, the work-
ings of social classes, castes, and networks, and so forth”.

Use of Evaluation Results

Why is programme evaluation conducted? There are, of course, standard, legitimate

answers to this question. Evaluation can help improve programme implementation
in ongoing and later rounds, keep programme personnel accountable, decide
whether a programme should be continued, and foster organisational learning
(Alkin 2010). However, evaluation sometimes becomes merely “ritualistic” in
nature (Rossi et al. 2004) – mandated by programme sponsors/donors and con-
ducted desultorily, often to justify predetermined funding and policy choices and
with little commitment to use evaluation findings meaningfully.12 This turns the
spotlight on the motivation of the evaluation sponsor and the purpose and credible
uses of evaluation.13
In India, the Planning Commission took a proactive interest in programme evalu-
ation in its early years and created an independent and technically competent agency
(the Planning Evaluation Office, PEO) to evaluate plan programmes. Further, PEO
reports were sent to Members of Parliament, and some public discussion occurred
(Pal and Chakrabarti); they were also an important agenda item at the annual confer-
ence of State Development Commissioners (Mehrotra 2013). From the 1970s there
was a decline in the importance of evaluation, partly due to decline in the role of the
Planning Commission itself as an agent of development. In the late 1970s, the
Dubhashi Committee on the PEO noted the low use of evaluation reports and
­highlighted both supply-side weaknesses (poor evaluation) as well as inadequate

12
In the context of ethics, it is also worth raising the question of who the evaluator should be
answerable to. In practice, typically accountability is to evaluation sponsors and programme
funders alone rather than to intended beneficiaries and specific marginalised groups, and this is
particularly problematic where evaluation is merely “ritualistic”.
13
Although in the text I do not discuss the problem of poor-quality evaluation reports, this is also
an important reality in the Indian context, particularly when “[e]valuations are typically carried out
by professionals who have neither an evaluation background nor a good understanding of how
governments function”, so that evaluation reports merely “contain generalised statements” rather
than contextually relevant recommendations based on real-world processes and pragmatic judge-
ments (Kumar 2010:239).
58 S. Jacob

institutional follow-up of evaluation reports. However, even in the more robust eval-
uation period earlier, there was little evaluation capacity available outside the
Planning Commission, particularly in state governments, and evaluation was seen
primarily from the perspective of intra-government accountability rather than social
accountability (Pal and Chakrabarti). Notes Kumar (2010:239):
Anything passes off for evaluation…. A tradition of evaluation is yet to permeate the admin-
istrative, bureaucratic, and political cultures of most South Asian countries. Most managers
are fearful of evaluation; they see it as an audit or a fault-finding exercise.

With greater pluralisation in governance over time, particularly from the 1990s,
civil society groups became more active in evaluation and accountability in India.
There was also a turn towards donor-imposed evaluation frameworks, but this was
“to evaluate against donor criteria for donor needs—and according to the criteria
and methods the donor has preselected” (Carden 2010:220).14

Conclusion

Much of the discussion of ethics in this chapter was interwoven with issues of
knowledge construction and framing. One aspect is the ethical implication of insuf-
ficient fealty to research methodology and presentation within the approach chosen
by an evaluation. Unfortunately, this applies to a large number of public health
evaluation studies from India. As Altman (1980:1183) notes, “it is unethical to pub-
lish results that are incorrect or misleading…. Once published, a piece of research
achieves both respectability and credibility…” While it may be relatively uncontro-
versial to note the problematic ethics of research that comes up short when bench-
marked against its own research/methodological paradigm, it is worth asking to
what extent the choice of research / methodological / epistemological paradigm is
itself an ethical one. Scientism – “the conviction that we can no longer understand
science as one form of possible knowledge, but rather must identify knowledge with
science” (Habermas 1971:4, cited in St. Pierre 2006) – can produce a closing off of
alternative knowledges, which has ethical implications.
An ethic and ethics of anekantavada (multifacetedness of knowledge and truth)
would imply a very different approach to public health programme design and eval-
uation. The routine application of off-the-shelf programme ideas would need to be
rethought (and the shelf likely dismantled), as would the broader technocratic
approaches that currently hold sway in programme design (as evidenced by the
biomedical, health economics approach of TINP). In the field of evaluation,
­participatory co-production of knowledge would need to be emphasised, changes in

14
Of the three types of “evaluation orientation” distinguished by Carden and Alkin (2012) – use-
oriented approaches, values-oriented approaches, and methods-oriented approaches – donor-
driven evaluation focuses more on the third and is particularly weak on the second (for instance,
genuinely participatory methodologies, as discussed earlier), whereas both the second and the first
are likely of greater relevance for the programme beneficiaries and the programme itself.
3 Knowledge, Framing, and Ethics in Programme Design and Evaluation 59

social relations highlighted, the present emphasis on impact estimation broadened

to an understanding of underlying processes and contexts and the evaluation results
better integrated with broader policymaking.

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Chapter 4
Ethical Analysis of Public Health
Programmes: What Does It Entail?

Giridhara R. Babu and A. Yamuna

Abstract While several professions have ethical guidelines set by their own pro-
fessional bodies, such guidance is often not available for implementation of public
health programmes. Therefore, very often, ethical perspectives involving the public
health programmes (PHPs) are neglected. As a result, several ethical issues arise
during the implementation phase. This chapter examines three key principles,
namely, respect to persons, beneficence, and justice, and explores its applicability to
public health practice. It analyse this framework using three case studies: the
Revised National Tuberculosis Control Program (RNTCP), introduction of Human
Papilloma Virus (HPV) vaccines in India, and polio eradication (PE) programme.
We used the published literature, reports of ongoing national programmes, and doc-
uments outlining ethical principles published by national and international organi-
zations to analyse the components of the framework. Each case study informs the
multifaceted dimensions of ethical issues and challenges associated with a specific
programme. In the absence of clearly developed guidance, we illustrate how using
our proposed framework can identify and resolve ethical issues in the existing pub-
lic health programmes.

Keywords Ethical analysis · Public health programmes · Respect for persons ·

Beneficence · Justice

G. R. Babu (*)
Public Health Foundation of India, Indian Institute of Public Health-Hyderabad,
Bengaluru, India
Wellcome Trust-DBT India Alliance, Hyderabad, India
A. Yamuna
Public Health Foundation of India, Indian Institute of Public Health-Hyderabad,
Bengaluru, India
e-mail: [email protected]

© Springer Nature Singapore Pte Ltd. 2018 63

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_4
64 G. R. Babu and A. Yamuna

Background

Public health professionals face ethical dilemmas on innumerable occasions while

implementing the public health programmes. Some of them include lack of resources
for appropriate ethical management, difficult choices between addressing the lack
of awareness and providing apt information to the people, negotiating political
framework, privacy and confidentiality of the collected data, prevention and control
of infectious diseases, addressing the health issues of the immigrant population,
challenges due to the community norms vs individual choices, etc. In such instances,
it is very difficult to distinguish prescriptive advice stemming from moral expecta-
tions and ethical standards. Baum classifies the challenges faced by public health
professionals into five categories: defining the authority, decision-making related to
resources, managing political influence, ensuring quality of care in programmes,
and upholding importance and scope of public health (Baum et al. 2009). In addi-
tion, the implementers have to endure other indirect, nonetheless, tough ethical
challenges including balancing population health benefits with cost-effectiveness,
ensuring autonomy, prioritizing public health problems, distribution of funds, lim-
ited control over decision-making, political issues and pressure (Baum et al. 2009).
Other challenges include inaccuracy in data assessment and reporting which is col-
lected among different groups such as race, religion, location, socioeconomic sta-
tus, etc.; dissemination of health information; and relationships with the legislative
and regulatory arms of government (Bernheim 2003). Confronted with these issues,
the choice of exercising ethically right or wrong decisions is often done by subjec-
tive interpretations. While several professions have ethical guidelines set by their
own professional bodies, such guidance is often not available for implementation of
public health programmes. Therefore, there is an urgent need for evaluating ethical
frameworks for utilization in analysing public health problems.
Most of the public health programmes (e.g. immunization, mandatory screening
for any infectious disease in airports) are implemented with utilitarian ethics, in the
belief that the programme promotes the greatest health for the greatest number of
people (State et al. 2004). In order to decide whether the public health programme
is ethically right or wrong, a definitive, verifiable ethical guidelines should be avail-
able for measuring both beneficial and adverse ethical consequences as a result of
the programme. However, rarely does such framework exist, in any public health
programme, which mandates measuring and reporting the very objectives of the
utilitarian goal. For example, public health programmes do not have data on analys-
ing effectiveness; respecting human rights, cultural beliefs, and equity in implemen-
tation; respecting individual choice; or informing pros and cons of any given public
health programme. The need for reducing conflict and uncertainty in public health
decision-making is mostly seen as frivolous by the implementers. For the public
health professionals, safeguarding the rights of individuals with respect to ethical
principles is a real challenge and needs a broad understanding of ethical analysis. In
order to reduce any conflict and uncertainty in public health decision-making, it is
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 65

important that specific orientation, skill training, and knowledge of ethical g­ uidelines
are imparted to the implementers about benefits and harm of the public health pro-
gramme. Availability of an ethical framework can help build the capacity of the
implementers in efficient management of the ethical dilemmas arising in implemen-
tation of the programme (Roberts and Reich 2002).

Existing Ethical Frameworks for Public Health Practice

Kass (2001) proposed ethical framework of public health, which included six steps:
need of identifying the public health goals, assessing effectiveness of the programme
in achieving its stated goals, determining known or potential burdens of the pro-
gramme, making alternative approaches to minimize or reduce the burden of the
programme, executing the program with ethical principle of justice and fair distribu-
tion of benefits and burdens, and balancing between benefits and burdens of a pro-
gramme (Kass 2001). Childress et al. (2002) suggested additional ethical framework
in public health ethics which includes producing benefits, avoiding, preventing, and
removing harms; producing the maximal balance of benefits over harms and other
costs (often called utility); distributing benefits and burdens fairly (distributive jus-
tice); ensuring public participation, including the participation of affected parties
(procedural justice); respecting autonomous choices and actions, including liberty of
action; protecting privacy and confidentiality; keeping promises and commitments;
disclosing information as well as speaking truthfully; and building and maintaining
trust (Childress et al. 2002). Bernheim et al. developed a guide to solve the ethical
issues in public health practice, and it includes list of questions subdivided in four
main areas such as assessing public health practice, identifying and recognizing ethi-
cal issues and considerations, identifying options and making and implementing
public health decisions, and evaluating the resolution(s) (Bernheim et al. 2007).
Baum et al. (2007) suggested six steps of ethical framework, and these are as follows:
determine population-level utility of the proposed action, demonstrate evidence of
the need and effectiveness of actions, establish fairness of goals and proposed imple-
mentation strategies, demonstrate accountability, assess expected efficiencies and
costs associated with the proposed action, and consider political feasibility and com-
munity acceptance (Baum et al. 2007). Further Bernheim et al. put forward three
ethical frameworks such as analysing the ethical issues in context, evaluating the
alternative approaches used in the context, and justifying the interventions (Bernheim
et al. 2009).
We propose examining the framework comprising of the trinity principles of
respect for persons, beneficence, and justice to guide ethical behaviour. This is an
improved version of an earlier published paper and extension of evidence in this
regard (Babu et al. 2014). The purpose of this chapter is to examine the framework
of ethical principles often applied in the context of research – respect to persons,
beneficence, and justice – and explore its applicability to public health practice.
Specifically, our approach uses key ethical principles with applied framework to
66 G. R. Babu and A. Yamuna

examine the ethical basis of certain public health programmes in India. The ­objective
of the chapter is to stimulate the implementers to apply an ethical framework in the
formulation and implementation of public health programmes.

Methods

For the purposes of this chapter, public health practice is defined as “any engage-
ment of public health professionals for implementation of public health programs”
(State et al. 2004). We studied the published literature, reports of ongoing national
programmes, and documents outlining ethical principles published by international
organizations (Dye et al. 2006, 2008; Eradication et al. 1993; Nelson–Rees 2001;
Association 1964; Biomedical and 1979; Sciences 2002). For our review, we
selected three examples from India in the area of current public health practice: (1)
the Revised National Tuberculosis Control Program (RNTCP), (2) introduction of
HPV vaccine in India, and (3) polio eradication (PE) programme. We used the fol-
lowing definitions in evaluating current public health programmes. Violation of any
one of the principles in the framework was seen as a ethical as well as programmatic
deficiency or weak point (Fig. 4.1, Source: Authors).
The term “respect for persons” (also referred to as autonomy) implies that the
choices of autonomous individuals are respected, and individuals incapable of mak-
ing their own choices are protected, and adequate information provision occurs to
lead to informed decision-making (Association 1964; Biomedical and 1979;
Sciences 2002). Respect for persons has also been used in the realm of the need to
listen to and pay attention to the needs and expectations of communities.
The term justice in the context of public health programmes would imply that
individuals and communities should not be exploited, selection for participation
in programmes must be fair, and vulnerable individuals who may benefit will not

Fig. 4.1 Proposed ethical framework in public health programme

4 Ethical Analysis of Public Health Programmes: What Does It Entail? 67

be excluded without good reason (Association 1964; Biomedical and 1979;

Sciences 2002).
The term beneficence means that participation in any public health programme
should be associated with a favourable risk-benefit ratio. It thus means that public
health interventions maximize possible benefits while minimizing potential harm
(Association 1964; Biomedical and 1979; Sciences 2002).
In the sections named by the ongoing public health programmes, we present the
results of applying the proposed ethical framework.

Revised National Tuberculosis Control Program

The Revised National Tuberculosis Control Program (RNTCP) is the country’s pri-
mary vertical programme to control tuberculosis (TB). All member states of the
World Health Organization (WHO) adopted the goal of detecting at least 70% of all
new infectious cases arising each year and to cure at least 85% of those detected by
2000 (later changed to 2015) (WHO 1991). The Millennium Development Goal
(MDG) 6c of decreasing the incidence of TB can be approached in one of the two
ways: (1) Define cases of TB to actually reflect the entire population who are at risk
and determine detection rates based on such a definition. This entails improvements
in detection and reporting, which are impossible without effecting improvements in
public health surveillance and addressing challenges in human resources and infra-
structure management to maximize reach in the community, (2) Continue with the
same definition of incidence and conclude that TB is under control. The latter
approach presents the risk of neglect of primary health infrastructure enhancement
in favour of greater focus on a vertical programme (Table 4.1, Source: Authors’
compilation from data available from Government of India 2017).
Simple and more practically oriented epidemiological tools can solve current
problems of uncertainty in measurement of disease and its impact on the population
and obviate a false sense of accomplishment (Babu 2008). It is recommended that

Table 4.1 Challenges in estimation of tuberculosis burden in India

Captured cases Missed cases
Type Notation Estimations Type Notation Estimations
Diagnosed b 1.3 million Incident deaths a 480,000–
incident cases 500,000a per year
Treated d 1.3 million per Missed incident c 3.3 million
prevalent cases year cases
Estimated p 5 million Dead prevalent E 700000a
prevalent cases cases
Total incident i 2.3 million Undiagnosed in F 100,000 per year
cases (2–2.5 million) network
Undiagnosed G 1 million
outside network
Assuming case fatality rate of 14%
a
68 G. R. Babu and A. Yamuna

Fig. 4.2 Diagram describing estimations in tuberculosis burden

population measures of disease, such as incidence and prevalence, be better defined

in TB programme implementation context and that clarity on which aspects of dis-
ease measures are being addressed be provided to all (Fig. 4.2) (Babu and
Laxminarayan 2012). This shall address the issue of false declaration of reduction
of TB cases.
Without drastically changing the terminologies used in the current programme,
the estimated incidence in India is falling short by at least one million per year. As
per TB India annual report 2017, the incidence of TB has reduced from 289/lakh/
year to 217/lakh/year since 2000 to 2015, and the mortality due to TB has reduced
from 56/lakh/year in 2000 to 36/lakh/year in 2015. For a period of 1 year, this would
result in a backlog of one million patients outside the network, who may or not get
treated. In addition, approximately 100,000 patients are not diagnosed as tuberculo-
sis even within the network of RNTCP hospitals. That means they add up 500,
000 in the last 5 years. In effect, this means over one million people per year would
be potentially transmitting the disease to the uninfected population, and the number
keeps growing as the programme sees no correction (e.g. five million in the last 5
years). If we assume the case fatality rate at around 14% among the untreated cases,
the proportion of incident deaths missed from the system would be 350,000 per
year. These are simply the preventable deaths, only if we had a proper system in
place to include them in coverage and only if we had a proper definition of inci-
dence in the first place. Therefore, the core ethical challenge in the programme
stems from the very definition of tuberculosis, used in the RNTC programme till
now. The programme till now was geared towards the convenience of calculating an
estimate and failed to effectively prioritize and address the goal of finding all the TB
infections and ensuring provision of treatment.
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 69

Justice

Considering the justice perspective, focus on prevention, early diagnosis and com-
prehensive case detection was completely absent from this programme. As illus-
trated by the above analogy, the biggest ethical challenge is that millions of patients
are not diagnosed due to the faulty premise of expecting them to visit health facili-
ties. In a country where nearly 60% of the patients visit private facilities and most
of these hospitals not registering to report the TB cases to the government despite
making TB a mandatory disease which is to be reported to the government. From a
justice perspective, missing millions of TB patients from the ambit of diagnosis and
treatment is a colossal ethical disaster. Further technology, however developed it is,
has not been able to provide a feasible point of care diagnostic test for tuberculosis.
Therefore, the biggest ethical challenge is letting the false negatives keep spreading
the disease under the belief that they do not have the disease. Not providing the cor-
rect diagnosis after doing so-called “diagnostic” test misses not only the opportu-
nity of treating but further aggravates the disease and spread in a community. Also,
it is completely unethical to term prevalence cases as incident cases thereby result-
ing in only a marginal reduction of TB cases and, therefore, shall result in falsely
declaring that new burden of disease has fallen. Maintaining the autonomy of the
vulnerable people is important while actively screening socially vulnerable group.
Currently, there is no national- or state-level guidance to respect the autonomy of
the vulnerable groups and, at the least, including slum dwellers, migrant workers,
prisoners, vulnerable children, elderly, tribal and indigenous populations, miners,
and notified economically backward districts. Using community resources like
ASHA, “Panchayat” bodies, Self Help Groups (SHGs), and informal care provid-
ers, undertaking symptom screen in the community followed by sputum collection
from symptomatic would be beneficial (Babu et al. 2014). Instead of directing the
policy towards prevention and initiating the population screening for missed
patients, the programme hitherto focused only on “patient-initiated pathway,” focus-
ing on TB case detection in health facilities as the first. Despite the recent policy of
mandatory notification of TB in India (Bhaumik and Biswas, 2012), a significant
number of care providers in a private sector are not part of the network. Also, many
doctors (public/private) do not suspect TB when presented to them, do not report
when they suspect, and are not aware of compliance if they start on treatment. Most
of the problems with preventive efforts (including wider coverage and screening)
can be resolved by increased allocation and importance provided to public health
efforts (such as comprehensive screening and early diagnosis).
70 G. R. Babu and A. Yamuna

Beneficence

The ethical principle of beneficence is disrupted on several levels. As per the stan-
dard definitions in infectious epidemiology, the source population for the detection
of tuberculosis (TB) should include all the persons who are at risk of acquiring
tuberculosis infection. Consequently, incidence rates of TB should reflect new
infections or new cases of active TB (Rothman et al. 2008). One, it treats new and
old cases TB as the same (old but not detected, immune cases, infectious but not
active TB) (Rothman et al. 2008). Two, detection rates will not reflect all the new
cases, since not all patients with new infections or active TB have access to health
facilities. Third, smear-negative status means that TB infections are absent; with an
accuracy of nearly 50%, nearly half of the cases go undetected (Begum et al. 2007;
Van Der Werf and Borgdorff 2007; Attaran 2005). Evidence suggests that 90% who
suffer from TB are not given any scientific treatment and 87% of people diagnosed
on the basis of X-ray alone are unlikely to have TB (Porter and Ogden 1997). Apart
from addressing the determinants of health in the long run, these preventive efforts
including educating the masses are outside the ambit of management by healthcare
providers, and merely mandating them to report won’t change the current scenario.
The TB detection rates in the country is tenuous as incidence rates, as it considers
the number of new “smear-positive” patients detected each year as the numerator
divided by the total number of examined smears. This is undoubtedly operationally
convenient and practically feasible but fails in indicating the actual burden in the
community (Chauhan and Agarwal 2005), an inaccurate estimation of TB incidence
for many reasons. Although the programme documents mention that the goal of
their programme was to decrease incidence, all the efforts were directed only on
decreasing prevalence (diagnosed and existing cases) for decades. What would have
ideally decreased the incidence were preventive measures such as research and
introduction of an effective vaccine and addressing the determinants of health
(housing to reduce overcrowding, etc.) in preference to therapeutic measures.
Failure to effectively prioritize and address the goal of finding all TB infections in
the community and providing treatment creates an ethical challenge, with “primary
and primordial prevention” completely missed in the programme. All this confusion
has surfaced by labelling prevalent cases as incident cases, thereby resulting in mar-
ginal reduction of TB cases. Therefore both the potentials of maximizing benefits
and averting the population risk are neglected.

Respect for Persons

The ethical principle of respect for persons is violated because there is either partial
or complete absence of critical information provided to a common man as well as to
policymakers to base decisions on whether truly reducing incidence or treating largely
prevalence of TB cases (Porter and Ogden 1997). For example, a person labelled as
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 71

Table 4.2 Ways to achieve universal access to TB treatment

 iagnose all persons with TB under RNTCP and DOTS treatment
D
Engaging community participation to provide universal access
Community involvement through village health and sanitation committee to spread awareness
about TB and importance of reporting cases
Removing false beliefs about TB and provide awareness that TB is completely curable

negative, but not informed that the test is inconclusive; and therefore, person is unable
to make an informed decision on the next course of action. There is a strong need of
population screening, change the diagnostic algorithm to include molecular tests, as
far as possible in a single patient visit, preventing drop out from diagnostic pathways,
enabling different diagnostic algorithms in different health care settings depending on
the availability of smear, X-ray and molecular tests and referral of patients and speci-
men to the sophisticated diagnostic centres.

Resolution of Ethical Problems

India has one fifth of the world’s burden of tuberculosis (Dewan et al. 2006) and TB
imposes enormous adverse economic impact. According to recent estimates, TB
caused India to lose an estimated 340 billion US dollars (Goodchild et al. 2011). The
country has 32.7% of the total population as poor (Sumner, 2012); TB can lead to
catastrophic out-of-pocket expenditure (Rajeswari et al. 1999). It is imperative that
oversight and management systems and ensuring political will at all the levels of
government are key determinants of the success of the initiative (Nair et al. 2010).
To achieve universal access to TB treatment, it is essential to diagnose all the per-
sons with TB into the ambit of RNTCP network and provide directly observed treat-
ment, short-course (DOTS) (Babu and Laxminarayan 2012; Control 2011). Capacity
building of the healthcare professionals is important in prioritizing the autonomy of
the screened individuals, patients under treatment, and the community. There is an
immense and important role for the community engagement towards universal
access (Table 4.2, Source: Authors’ compilation).

Human Papilloma Virus (HPV) Vaccination Programme

In India, 132,000 women develop and 74,000 die from cervical cancer every year
(Bhatla and Moda 2009). It is estimated that the risk of cervical cancer in India is
2.5 per 10,000 women in 1 year and risk reduction from vaccination is 0.00025,
which translates that 4,000 girls need to be vaccinated to prevent 1 death (Aneja and
Puliyel 2009). The mortality rate due to cervical cancer varies from 7.7 to 65.5 per
100,000 in India (I Mattheij et al. 2012a; Rastogi et al. 2007). There have been
72 G. R. Babu and A. Yamuna

Table 4.3 Data regarding cervical cancer and HPV vaccination in India
Cervical cancer and HPV vaccination Statistics
Women at risk of cervical cancer (≥15 years) 469.1 million
Women who develop cervical cancer (annually) 1,32,000
Age-standardized cervical cancer rate 27/1,00,000 population
Risk reduction due to HPV vaccination 0.00025

recent debates on whether one should use HPV vaccine in India or not (Babu 2012a;
I. Mattheij et al. 2012a, b). These perspectives suggest that the available evidence is
neither in support nor rejection of using HPV in India (Table 4.3, Source: Authors’
compilation). Notwithstanding this, the Indian unit of Program for Appropriate
Technology in Health (PATH) initiated HPV vaccination trial in two states in 2009.
The trial had several ethical issues with respect to informed consent, follow-up of
the participants, and compensation for adverse reactions. Immunization in India
was initiated based on the assumption that HPV vaccine is of greater public health
importance, with an objective of considering to include the vaccine in national
immunization programme. In this section we examine whether the use of HPV vac-
cine can be justified by using the ethics framework.

Beneficence

There is simply no sufficient evidence regarding presence of an effective vaccine

against several strains of human papilloma virus (HPV), which can cause cervical
cancer (Haug 2008a). The clinical trials and cost-effectiveness studies have pro-
vided evidence that two vaccines directed against HPV-16 and HPV-18 serotypes are
in use (Kim and Goldie 2008). HPV serotypes 16 and 18 account for nearly 76.7%
of cervical cancer in India (Kaarthigeyan 2012). However, protection offered by the
HPV vaccine is only for certain types of serotypes for a shorter duration (Abby
Lippman et al. 2007b). The vaccines have clearly demonstrated an efficacy of nearly
90% against preventing CIN2+ lesions containing HPV-16 and HPV-18 (Monie
et al. 2008). Also, recent reviews suggest that the nine-valent vaccine directed
against HPV types 6, 11, 16, 18, 31, 33, 45, 52, and 58 will increase the percentage
of preventable HPV-associated cancers from 63.4% to 73.5% (Yang and Bracken
2016). For example, one vaccine is 91% effective against select HPV serotypes that
cause adenocarcinoma and 83% effective overall against squamous cell carcinoma;
another vaccine is 78% effective overall against HPV types that cause adenocarci-
noma and 73% effective against HPV types that cause squamous cell carcinoma (5).
Our analysis (Fig. 4.3, Source: Authors) indicates that it is nearly futile to intro-
duce HPV vaccine compared to more efficient measures such as improvements in
screening and HPV testing, as well as preventive measures like improvements in
personal hygiene and early detection; preventing all other risk factors through
­education will have effective results. Further, cost-benefit and/or cost-effective anal-
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 73

Fig. 4.3 Protection by HPV vaccine against cervical cancer determined by effectiveness and effi-
cacy considering full and 50% coverage
Figure 4.3 explains the ethical concern, despite achieving an ambitious goal of 100% coverage of
HPV vaccination in India; due to the effectiveness (70%) and vaccine efficacy (87%), only 61%
girls are protected against cervical cancer, whereas the remaining 39% girls will not be protected
against cervical cancer. Similarly, with 50% of coverage, 70% girls will not be protected against
cervical cancer. Therefore, despite the high cost, there is no sufficient evidence to suggest complete
protection

ysis has not been done for India to suggest that it is beneficial to introduce the vac-
cine under the national or a state programme. Inclusion of the vaccine in a state or
national program violates the ethical principle of beneficence. It is because there is
no evidence to support that vaccination programme can assure better prospects for
the planning compared to more economical and safe methods of prevention (such as
improvements in personal hygiene through education, improvement in sanitation),
better screening, better diagnosis, or early treatment of HPV infection (Basu 2006).

Justice

HPV vaccine costs around ₹2700 per dose, and the recommendation is to take two
doses in the 9–13 age group. Evidence indicates that vaccination requires further
booster doses (Haug 2008b) and poses additional economic burden and challenge.
Assuming three primary and equal number of booster doses are given to every girl
in 9–13 age group, a cost of ₹16,200 is incurred by the government, translating to
74 G. R. Babu and A. Yamuna

approximately ₹900 crores1 (11 billion USD) spent on the vaccine at national level
for one cohort of children in this age group.
Also, it is not clear how many booster doses will be needed and whether they will
be safe in Indian settings (Lippman et al. 2007a; Haug 2008a). In addition, govern-
ment’s actions cannot be justified if it introduces HPV vaccine while no renewed
comprehensive national efforts are taken to improve screening, diagnosis, and man-
agement of cervical cancer. The ethical principle of “justice” will be violated if it is
targeted only to cater to the vulnerable individuals. Ethical resolution of these would
involve having national vaccine policy that formulates ethical guidelines for intro-
duction of new vaccines. There are no wider consultations with civil society organi-
zations and community representatives to inform, discuss, and rationalize
introduction of HPV vaccines. Therefore, vulnerable population is either petrified
of the huge costs; even if people can afford, there is no convincing information. The
recommendation of the experts whether HPV vaccine will be beneficial or not is
also confusing. Simply put, there is no information to help the parents in deciding
whether they should vaccinate or not.
The vulnerable community also is not part of the data collection process; and,
therefore, available evidence is not generalizable to the entire country. As an anal-
ogy, the disease burden data is captured from mostly urban-based cancer registry
(Babu 2009). Severe cases in rural areas may die at home before detection or die at
hospital before diagnosis. Known as survival bias in epidemiology, this problem
results in biased priority setting at the policy level (Babu 2009). The greatest chal-
lenge is to get the reliable data from people belonging to the vulnerable groups,
especially in rural areas. Due to the inconstant estimates, and lack of data on extent
of the disease, it is almost impossible to understand whether a HPV vaccination
programme would decrease the imminent cancer burden in India (Babu 2012b).
The cancer registries and surveillance systems in India are incomplete, and,
therefore, comprehensive coverage of every region in India is not done (Mattheij
et al. 2012a). If the vaccine is to be used as part of the immunization programme,
every subpopulation should be covered equally, the epidemiology of the disease
should be known, the disease should be to justify its prioritization, and surveillance
systems should be capable of assessing the impact of a vaccine intervention (WHO
2005). There are no sufficient details available on any of these requirements. To add
to the despair, while the Government of India stopped the research on HPV vaccina-
tion by PATH (LaMontagne and Sherris 2013).
Ideally, governments should make decisions of introducing newer vaccines into
national immunization programmes based on evidence on the disease burden. In the
absence of such evidence, the decision might be guided either by expertise provided
from international organizations or through advice given by experts and/or lobbyists
representing private manufacturers. However, all such guidance can be subjective
and biased depending on the priorities (Babu and Murthy 2011). For example, the
use of condoms and maintaining genital hygiene are equally effective in preventing

1
The population in the age group was estimated from the data available from http://mhrd.gov.in/
sites/upload_files/mhrd/files/statistics/PopulationProjection2016%20uated.pdf.
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 75

the HPV infection and subsequent predilection to cancer. There is no policy guid-
ance or expert consultation whether the government should promote HPV vaccine
or the awareness to use condoms and promote hygiene. In the absence of focus and
prioritization by the policymakers, the vulnerable community is worst affected.

Respect for Persons

Evidences suggest there is violation for respect for persons in HPV vaccination
programme; the rights of the person are not safeguarded. Individual’s autonomy has
been not respected. Policy guidelines stress the introduction of HPV vaccine, since
it protects against cervical cancer, but the epidemiological evidence for the intro-
duction of this vaccine in India is poor, and introduction of such vaccine is based on
since other countries has started up such programme (Madhavi et al. 2010). Since
the vaccine is expensive, some health practitioners advise that this can be used by
the upper- and middle-class families, which is a clear disadvantage for poor fami-
lies. Large trials regarding HPV vaccination have not been conducted in India, and
approval in India for the introduction of the vaccine has been done based on small
trials, and still there is no evidence for the number of doses required (frequency). In
the trial conducted by PATH, autonomy has not been respected in the trial con-
ducted in two states, and also no valid informed consent was taken. The trials in
India have been criticized for unethical conduct (Sarojini et al. 2010; Ramanathan
and Varghese 2010).
Therefore, there are multiple ethical challenges related to cervical cancer preven-
tion. First, we do not know the cancer burden in females living in all the areas, espe-
cially in the east, far north, and most of rural India (Dhillon et al. 2011; Swaminathan
et al. 2011). Second, as per the available patchy evidence, the cervical cancer rate is
lower compared to other developing countries (Forman et al. 2017). In the absence of
reliable data, surveillance system and monitoring mechanisms, and introduction of
HPV vaccination programmes, the country would not get benefited from the vaccine.
While in the absence of data, decision-making for introducing the HPV vaccine is
troublesome; the State Governments of Sikkim, Punjab and Delhi have already gone
ahead and implemented the HPV vaccination programme. Due to the present high
cost of the vaccine, including it in the Universal Immunization Program (UIP) is
highly contentious.

Resolution

The public health principles involved in introducing a new vaccine require that there
should be satisfactory data available to prioritize the condition as an important
health problem in India. The cancer registry should capture all the rural areas with
expansion of the screening across the country. If the data suggests that intervention
76 G. R. Babu and A. Yamuna

is necessary, studies should be done exploring the cost-effectiveness of personal

hygiene, sanitation, early screening, and treatment and introducing a new vaccine.
If the country/states decide to implement HPV vaccination, a register should cap-
ture all the adverse effects associated with the vaccine; in the case of an adverse
event, an accepted compensation for the persons affected with adverse events of the
vaccine is made available, and the vaccine should be cost-effective. The state and
central governments should consider evidence before introducing the HPV vaccine.
The country should have a policy on the HPV vaccination.

Disease Eradication Programmes

For illustration purposes of disease eradication, we have used the polio eradication
programme here. Polio is an infectious disease caused by a poliovirus, which lives
in the throat and intestinal tract. It is mostly spread through person-to-person con-
tact with the stool of an infected person and may also be spread through oral/nasal
secretions. Polio affected thousands of children in India and caused severe illness in
thousands of children each year before polio vaccine was introduced. Although
most affected people with the poliovirus have no symptoms, around 1 in 200
infected children could develop paralysis, which leads to permanent disability and
even death.
In 1988, the World Health Organization (WHO) initiated global eradication of
poliomyelitis by the year 2000. Eradication programmes aim for reducing the inci-
dence of infectious diseases to zero and thereby completely exterminate the virus all
over the world. Wild poliovirus, the strain of the virus responsible for causing the
dreaded poliomyelitis, has not been found in India since 13 January 2011. Therefore,
India is a “polio-free nation” for more than 7 years.
The momentous feat of polio eradication in India is accomplished by immuniza-
tion with OPV. Currently, OPV and IPV vaccination schedule is practised in national
programme in India.

Beneficence

There are two types of vaccine that protect against polio: inactivated poliovirus vaccine
(IPV) and OPV. IPV is given as an injection in the leg or arm, depending on the
patient’s age. OPV consists of a mixture of live-attenuated poliovirus strains of each of
the three serotypes, selected by their ability to mimic the immune response following
infection with wild polioviruses but with a significantly reduced incidence of spread-
ing to the central nervous system (John 1976). Three or more spaced doses of OPV are
required to generate adequate levels of protection against the disease. The OPV acts by
producing antibodies in the blood to all three types of poliovirus and, in the event of
infection, also produces a local immune response in the lining of the intestines, thereby
stopping the poliovirus multiplication.
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 77

The administration of OPV itself can result in paralysis, termed as vaccine-­

associated paralytic polio (VAPP). VAPP is associated with a reversion of the vac-
cine strains to act more like neurovirulent profile of wild poliovirus. In a few
instances, such vaccine strains have become both neurovirulent and transmissible
and have resulted in infectious poliomyelitis (Minor 2009; John and Vashishtha
2012). Despite OPV causing paralysis in children continued for years, the country
had to continue the polio eradication programme because the wild virus could have
affected more children. At the least, it was estimated that about 60–300 VAPP cases
occur every year although the numbers can be high and the programme has not
made this information publicly available (Paul 2004).

Justice

No compensation was ever paid to the affected families, in which the children were
paralysed due to OPV. Arguably, as long as the OPV is continued to administer,
there will be few hundreds or thousands of children paralysed. As public health
practitioners, another aspect of discomfiture results from providing very little or no
information to the laypersons. The public is completely unclear about the benefits
and risk due to the use of two different forms: OPV and IPV. Hundreds of vulnera-
ble families who accepted the vaccine due to the perseverance of the ongoing pro-
gramme might have had a paralysed child due to the vaccine itself (Yash Paul
2005b).
Polio eradication programme was very prolonged taking most of the efforts of
health workers in high-risk states such as Uttar Pradesh and Bihar. As a result, the
focus provided to routine immunization programme and other public health pro-
gramme was poor and resulted in building up the huge cohort of unimmunized
children for other diseases. Also, it led to the fatigue and decreased performance of
the health workers (59). Running the vertical programmes such as disease eradica-
tion programme drives away the primary healthcare resources and results in imbal-
ance and weakening in healthcare services (Gorman 2013). Also, the constrained
health budgets of governments are better utilized for finding marginal cases under
disease eradication programmes; other local health problems will be neglected
(Caplan 2009; Yash Paul 2005a).

Respect to Persons

Practically, no public health programme takes informed consent from persons after
explaining the benefits and potential risks of the programme. Hence, poor informed
consent from the parents is another important ethical concern of protecting the
autonomy of parents; they were provided with no or limited information regarding
harmful effect of oral polio vaccine (Yash Paul and Dawson 2005). During polio
eradication programme, several parents had confusions regarding intensification of
78 G. R. Babu and A. Yamuna

the frequency of the programme (Hussain et al. 2012). With the aim of eradication,
in many of the countries, children are exposed to high risk of multiple doses of vac-
cination since the recordkeeping is poor in such countries (Caplan 2009). In some
parts of the world, ensuring the autonomy for laypersons created hassles to the
programme managers, resulting in people opposing the vaccination and resulting in
recurrence of disease due to persistence of reservoir of infection. These instances
from the USA, UK, and Canada have guided the public policy efforts in India to
remain silent on the patients’ rights and autonomy in order to reach the goal of
eradication (Caplan 2009).

Resolution

For some of the infectious diseases, seeking elimination and control measures could
be effective with due credence to following the ethical principles. What was thought
to be a daunting task by the Global Polio Eradication Initiative (GPEI), India elimi-
nated wild poliovirus (WPV) transmission. While this is a matter of pride for all the
Indians, ethical guidance seeks that we maintain the data regarding VAPP and
Vaccine Derived Poliovirus (VDPV) publicly and compensate the victims of the
adverse effects of the vaccine. Ethical concerns involving disease control/elimina-
tion programmes can be prevented in the future if the policymakers give due cre-
dence to respecting the rights of people.

Conclusions

Public health programmes face numerous ethical issues while practising according
to ethical principles. We examined the ethical principles of respect for persons,
beneficence, and justice, in the implementation of three public health programmes
in India. These principles have been primarily used as a framework for evaluating
research on human participants. We apply these principles in the context of public
health policy promotion and programme implementation in India, and our analysis
might apply for the low- and middle-income countries (LMICs). Public health prac-
tice in the modern world features numerous ethical dilemmas (Attaran 2005; Detels
et al. 1999). We understand that governments and international agencies would have
faced these dilemmas while implementing public health programmes including the
examples used in the chapter. The present chapter is not a critique of existing public
health programmes, but we enforce that there should be ethical focus for their
improvization, so that there will not be violation of ethical principles. The analysis
4 Ethical Analysis of Public Health Programmes: What Does It Entail? 79

indicates that most of the ethical violations may be prevented if any of the ethical
frameworks are adopted, and we have presented such framework comprising of
respect for persons, justice, and beneficence which is applied before practice.
Whether done as an institutional policy or not, public health professionals can
learn from the personal experience and can collaborate using ethics as a fundamen-
tal component of decision-making. If the fundamental principles of ethics, namely,
beneficence, non-maleficence, and autonomy are followed, most of the challenges
can be reduced. The ethical actions needed are not exhaustive subsumed in these
three principles; many other actions such as population-level utility, establishing
accountability, ensuring competency and capabilities, etc. will aid in resolving ethi-
cal issues in public health practice (Baum et al. 2007). Also, public health pro-
grammes should ensure that privacy and confidentiality are maintained and
education and ethical training with support are provided to public health
practitioners.
We recommend piloting the application of the principles of respect for persons,
beneficence, and justice as a suggestive template for guiding on ethical values for
public health programmes before scaling up. These principles should be shared with
policymakers and used in taking public health programmatic decisions. For resolv-
ing ethical issues of any public health programmes, there must be a role of ethical
theories and principles, ethical decision-making authorities, ethical committees,
public, and other stakeholders. In keeping with the spirit of the Belmont’s report, the
focus of the public health programmes can be aimed towards preventing gross
unethical treatment of humans. The policymakers can ensure that public health pro-
grammes are evaluated against some ethical framework before implementation in
India. In the absence of clearly developed ethical frameworks, there is a perception
among the health managers that they are doing public good by implementing the
public health programme and hence minor aberration or side effect to few individu-
als is tolerable (if not justified). Often, the stance of doing public good is mistaken
as being ethical. It is important that the public health practitioners take proactive
measures than being reactive to ethical violations. Towards this, we hypothesize that
using pre-emptive ethical screening for health programme development and imple-
mentation might limit many violations. As a first step, we propose that existing
public health programmes can be reviewed through this framework. Currently, the
role of health policymakers is to make decisions on behalf of people (for their good)
in a low- and middle-income country including India. The focus of using an ethical
framework shifts the decision-making regarding accepting or rejecting public health
intervention to the individual level by people themselves, and health managers need
to merely facilitate it. This is a daunting task, and we are aware of the limitation;
however, using the ethical principles is not a matter of chance or choice but of abso-
lute need for protecting the public in public health.
80 G. R. Babu and A. Yamuna

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Chapter 5
The Endosulfan Tragedy of Kasaragod:
Health and Ethics in Non-health Sector
Programs

Adithya Pradyumna and Jayakumar Chelaton

Abstract It is now over 15 years since the aerial spraying of endosulfan over
cashew plantations was stopped (and subsequently banned) in Kasaragod, Kerala.
Thousands of individuals have been affected in permanent ways in the exposed vil-
lages. As there are potentially several important lessons to be learned from this
experience, it would be useful to reflect on the decision-making that led to the
design of the spraying programme and examine the efforts that are being made
towards managing these health impacts. Through the lens of public health ethics,
this chapter seeks to explore the design and implementation of the relief and reme-
diation programme at Kasaragod, the identification of and support provided to vic-
tims and the role played by actors including experts, local community and local
government. The chapter concludes with a discussion on approaches to predict and
avoid such occurrences through Health Impact Assessment and the involvement of
local people and the challenges that might prevent the adoption of such approaches.

Keywords Environmental health policy · Environmental health ethics ·

Environmental justice · Health Impact Assessment · Local health systems ·
Hazardous exposure

Introduction

India has had its share of anthropogenic environmental health disasters over the
years. The ones most devastating and vivid from recent memory are the Bhopal gas
tragedy of 1984 and the endosulfan tragedy at Kasaragod (until 2002). Both of these
affected several thousand people locally. Though several books and articles have
been written about the Bhopal gas tragedy, it still does not do adequate justice to the

A. Pradyumna (*)
Society for Community Health Awareness, Research and Action (SOCHARA),
Bangalore, India
J. Chelaton
Thanal, Trivandrum, India

© Springer Nature Singapore Pte Ltd. 2018 85

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_5
86 A. Pradyumna and J. Chelaton

medical and public health lessons that have been (or should have been) learned from
such adverse events (Pradyumna and Gaithonde 2013). Efforts made by various
actors over three decades in Bhopal include identifying and treating victims, orga-
nizing medical care, patient management and follow up, creating awareness, legal
action, compensation and rehabilitation efforts, livelihood programmes and research
projects among other things. Yet, much less has been documented about the endo-
sulfan tragedy, possibly because it was not a sudden accident (like the Bhopal gas
tragedy) but a situation that was insidious and worsened over years. It is now over
15 years since the aerial spraying of endosulfan over the cashew plantations was
stopped (and subsequently banned) in Kasargaod, Kerala. While the environmental
impacts of the spraying were felt soon after the operations began in 1976 with the
disappearance of bees (in other words, the “health” of the bees), the human health
impacts were noticed by the early 1990s by a local physician (Department of Health
and Family Welfare 2011; Rajkumar 2002). Thousands of individuals have been
affected in permanent ways in the exposed villages with birth defects and mental
retardation among children who were born after the initiation of spraying operations
and increased incidence of abortions and gynaecological disorders among women.
According to government reports, by 2011, at least 312 individuals had died due to
health effects of endosulfan [cited in (The High Court of Kerala 2015)].
This chapter discusses the relief and remediation programme for the victims,
families and communities and examines the space for health considerations in
decision-­making in non-health programmes (in this case, the aerial spraying pro-
gramme). The authors are environmental health practitioners engaged in interrogat-
ing ethical implications and lessons of environmental disasters. Both the authors
have been closely involved in the endosulfan tragedy in different capacities. JC has
been actively engaged in the “Ban Endosulfan” campaign since the late 1990s as
part of an NGO called Thanal and has participated in consultations on this issue. AP,
as a community health intern, initially visited the affected areas in 2008 under the
guidance of JC. While AP has been following up through an analysis of this issue in
the media and academic spaces, JC has been following court cases, judgements,
relief programme updates and governmental decisions. This chapter thus draws on
the authors’ close engagement with the campaign, interactions with local commu-
nity, consultations with concerned authorities (government and others), a historical
tracing of different moments in the unfolding and management of the event as well
as an analysis of existing academic literature.

Relief and Remediation: Response to the Crisis

As the tragedy is a matter of history, it would be appropriate to first look at the relief,
remediation and rehabilitation initiatives that have been undertaken at the local
level. The history of these efforts provides important insights on how various state
and non-state actors diagnosed and responded to the tragedy, which itself gives
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 87

insight on priorities, ethics and technical challenges. The relief efforts continue to
unfold even as of today. There have been a range of initiatives, both sporadic and
systematic, by various actors, both local and international, at different periods of
time. Also, in addition to the use of public money, donations were sought through a
dedicated website by the Endosulfan Victims Relief and Remediation Cell for relief
and remediation measures.
Around the time when court and government orders were made for banning aer-
ial spraying of endosulfan in Kasaragod in 2003, medical camps had been initiated
in the affected villages by the Health Department and Calicut Medical College with
the support of the District Panchayat and administration. Local groups also initiated
efforts towards remediation using money and other materials collected locally from
friends and well-wishers from abroad. The money was reportedly used for support-
ing medical expenses, repayment of debts and supporting basic needs, according to
a key informant in the community. Local people recognized that these interventions
were only limited in their reach and temporary but considered them important from
a “psychological” perspective (District Panchayat, Kasaragod 2005a). The recogni-
tion that the distress faced by thousands was potentially preventable may have had
a great mental impact on those who were ill and their caregivers. Such sporadic
efforts may have played a critical role until systems kicked in.
Based on petitions from the concerned local groups, a consultative workshop
was planned by the Kasaragod District Panchayat in 2005. This consultation on the
relief and remediation plan was co-organised with various NGOs and attended by
local people, academicians, doctors and panchayat members from the affected vil-
lages. The plan itself covered policy, social, health, environmental, financial and
operational aspects (District Panchayat, Kasaragod 2005a). While the creation of
the Endosulfan Victims Relief and Remediation Cell was taking time, the chief
minister of Kerala also announced a budget allocation from the state government
towards these activities. This was in addition to resources that were being raised by
district and gram panchayats, NGOs and the Social Welfare Department (Government
of Kerala 2006).
The Endosulfan Victims Relief and Remediation Cell was formally initiated at
the headquarters of the Kasaragod District Panchayat in 2007. Meetings among 34
members (including panchayat and civil society members) were held once in
2–3 months, where issues of budget allocation, remediation measures and future
activities were discussed. The group decided to allocate Rs. 37 lakh towards com-
pensation and medical care, Rs. 7 lakh towards procuring aids for the people with
disability and Rs. 6 lakhs for research (Pradyumna 2009). It was also felt that the
allocated amount of Rs. 50 lakhs was inadequate (keeping in mind continued sub-
mission of applications for relief) (Venugopal 2008). While this allocation was
decided through consensus among the Cell members, it would be useful to further
document how the decision was made. In addition, besides the announcement of the
budgetary allocation, there was no clear intent of sustained financial support to the
relief activities over the coming years.
The Social Welfare Department had previously given a monthly assistance of Rs.
250 to caregivers/families of persons with severe disabilities resulting from endo-
88 A. Pradyumna and J. Chelaton

sulfan exposure, in addition to the pension of Rs. 250 already being given to ­disabled
persons in Kerala (Government of Kerala 2006). In 2011, the monthly pension was
increased to between Rs. 1000 and 2000 (based on the “category” of illness
described later). All affected families were also provided with subsidized rice at Rs.
2 per kilogram (Government of Kerala 2006), as was done for families below pov-
erty line. Caregivers were also later given a monthly pension of Rs. 700 in the case
of bed-ridden patients and those caring for persons with mental retardation (The
High Court of Kerala 2015).
The government has provided Rs. 50,000 for each family when an affected per-
son in the family died (Government of Kerala 2006). At that stage, families of 135
victims got this compensation. People continued to die due to chronic ailments, and
lists continued to be prepared (Venugopal 2008). In 2008, an officer at the Cell
reported challenges in future compensations due to fund shortages (Pradyumna
2009).
The National Human Rights Commission (NHRC), based on fresh field reports
in 2010, investigated the ground situation and made recommendations to the central
Kerala state governments. These stemmed from perceived “little impact” of the
relief and remediation. In the list, there was a suggestion to compensate Rs. 5 lakh
to next of kin of the deceased and seriously ill victims and 3 lakh for those with dis-
abilities. This is besides other recommendations to support medical care and basic
support (NHRC 2010). The estimated amount needed to fulfil these recommenda-
tions was Rs. 250 crores, as calculated by the Kerala state government, which the
high court perceived to not be an unmanageable amount (The High Court of Kerala
2015).
As of 2011, 178 families had received the compensation. At that stage, a proposal
to increase compensation for the seriously ill to Rs. 1 lakh was made (Department
of Health and Family Welfare 2011). Part payments were initiated in 2015 (The
High Court of Kerala 2015) of initially Rs. 46.1 crores to 3549 victims, Rs. 44.6 s
to 3435 victims in the second instalment, and Rs. 42 crores to 2728 victims in the
third instalment. In 2017, the Supreme Court directed the state to release the entire
undisbursed amount of compensation to the affected persons in response to a public
interest litigation filed in 2012. Overall, it is unclear how various amounts for com-
pensation, pension and support were calculated and what the proposed duration of
the pension was, and these are important from point of view of the affected families,
ethics and programme management.
There were other actors too providing relief on a sporadic or consistent basis.
Solidarity Youth Movement (SYM) provided food and other basic provisions on a
monthly basis since 2007 (but it is unclear till when it continued or how many fami-
lies were supported. It likely was discontinued soon after state interventions began).
They also constructed houses for some of the affected families who didn’t have
proper housing. Medical camps and paramedical care were also reportedly sup-
ported (Pradyumna 2009). Some of the children were also supported financially for
higher education. Unfortunately, details of the support provided are unavailable.
The role of nongovernmental actors has always been important in disaster relief and
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 89

rebuilding, and if these efforts are systematically documented, impacts of pro-

grammes can be determined.
The Sarva Shiksha Abhiyan made efforts (at least on a pilot basis with 108 chil-
dren) for families with physically or mentally challenged children. Weekly meet-
ings and parent trainings are being conducted, and the necessary aids are being
provided to the children after thorough assessments. Exercises were also being
taught and development of social skills was also encouraged. Medical and rehabili-
tation measures are also being provided at these centres (Pradyumna 2009). In addi-
tion, BUDS schools for differently abled children were initiated in the affected areas
(Special Correspondent 2011), and reportedly nine were opened. Affected children
and those in their 20s were also supported in the development of social skills and
occupational and rehabilitative therapies. It was also a relief for caregivers.
According to a key informant, over a period of time, these schools have lost funding
support from the local government, and there is significant dropout of students, and
now local groups are considering starting their own schools. Even in 2016, a BUDS
Special School was initiated with a special fund provided by the National Bank for
Agriculture and Rural Development (Correspondent 2016). While the size of school
had grown soon to 115 students, there are already reports of poor compensation for
teachers. There has also been a move to not admit affected persons over 18 years of
age (Varier 2016).
Though there have been challenges even in initiating support services such as
community-based rehabilitation, special schools and pensions, these have been ini-
tiated at least in some areas (Pradyumna 2009). Early on, it was felt by some that the
relief was not adequate and that the main focus was on compensation rather than
protecting the living, a view that was not shared by the district administration.
Others felt that the treatment provisions were good, but community-based care and
rehabilitative services were not adequate (Venugopal 2008). Now, newer schemes
for support, such as subsidised power supply, are being considered (The Express
News Service 2017).

 he Role of Health Professionals: Assessing Public Health

T
Impacts and Responses

It was a local health professional who identified the unexpectedly high number of
cases of congenital anomalies and reproductive health problems in his practice. He
systematically documented the cases and communicated his findings through popu-
lar and professional magazines in 1996 (Joshi 2001). Other medical and public
health professionals also contributed to the campaign by making independent tech-
nical enquiries and preparing reports (Centre for Science and Environment 2001;
Quijano 2002; Rajkumar 2002). Physicians can have great insight about local health
trends and have an important role to play. Often this could be challenging due to the
presence of powerful groups with vested interests.
90 A. Pradyumna and J. Chelaton

In the civil society consultation on the remediation plans held in 2005, health
professionals participated actively. Perspectives from various systems of medicine,
allopathy, ayurveda and homeopathy, and also public health were shared by the
experts. This included information about potential health impacts and opinions on
approaches to treat and organize relief plans. A proposal was also made that a tech-
nical team will visit Bhopal to understand the approaches used for documenting
victims, treating them and systematically following them up over a period of time
(District Panchayat, Kasaragod 2005b). This was indeed a very good idea, so that
precious time is saved through the adoption of lessons learned in Bhopal and also
use financial and human resources more efficiently and effectively. However, a key
informant stated that the trip to Bhopal was not done, but a few volunteers from
Bhopal did visit Kasaragod briefly.
“Health” suggestions given at the consultation were eventually included in the
plan document prepared by the District Panchayat of Kasaragod (District Panchayat,
Kasaragod 2005a):
–– Conducting door-to-door surveys to establish data at individual level (undertak-
ing all procedures at ethical levels prescribed by the ICMR).
–– Identification of the affected to initiate relief measures.
–– Listing appropriate treatment options for each type of health impact.
–– Establishing a system for continuing medical assistance.
–– Setting up a surveillance system for screening cases.
–– Initiating community-based monitoring and rehabilitation of the affected with
the support of Calicut Medical College.
–– Creating special schools with appropriately trained teachers in affected areas.
–– Supporting services at schools and anganwadis at local level for affected chil-
dren, creation of day care centres at ward level and special assistance for mothers
of affected children.
–– Supply of appropriate aids and devices to the differently abled.
–– Uninterrupted supply of medicines for the affected.
–– Special card given for waiving off medical costs.
–– A relief programme for caregivers in the locality.
–– Measures for children who have been orphaned.
–– Sensitive approaches to be used for identifying and treating problems affecting
women.
–– Health assessment and relief measures for workers in the plantation.
–– Nutritional supplementation through involvement of local self-help groups.
–– Assess training needs at local and district levels.
–– The medical department should become a member of the proposed Endosulfan
Victims Relief and Remediation Cell (District Panchayat, Kasaragod 2005b).
Pariyaram Medical College Hospital was initially entrusted with the responsibil-
ity of providing surgical interventions for those victims who needed it. This was
supported by the government (Government of Kerala 2006). The Cell made special
provisions to make seizure and psychiatric medications available at each primary
health centre (PHC) in the affected areas due to the relatively high number of such
cases in these areas (Pradyumna 2009).
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 91

Additional studies were commissioned in 2010 by the state government to fur-

ther understand the health situation in impacted areas and the environmental and
long-term impacts. It was further confirmed that reproductive health conditions,
experience of undergoing surgeries among younger people, child mortality and con-
genital anomalies were significantly higher in endosulfan-exposed populations
[cited in the Department of Health and Family Welfare 2011)].
Systems were then put into place to ensure complete and sustained care and sup-
port to officially identified victims. This included (Department of Health and Family
Welfare 2011):
–– A treatment smart card: to provide cashless registration and treatment and to
have the data of the patient accessible online at the empanelled hospitals. This
had been provided to 4273 by mid-2011, and software for recognizing and using
smart cards had already been installed in 11 empanelled hospitals, and appropri-
ate training for staff members was also being given.
–– Even before the operationalization of the card, free treatment was possible for
enlisted patients with a letter from the DMO. Such provisions become important
to improve access and reduce the burden on the victims, especially in the times
of the “Aadhaar”. Prompt payments for services were a key factor to continue
trust between partners, and it was claimed that payments were prompt in 2011.
Furthermore, “mobile medical units” were set up to provide home-based care for
identified patients. These teams were multidisciplinary, including doctors from vari-
ous streams of medicine, physiotherapist, mental health worker, special trainer and
speech therapist. Three such teams had been set up as of 2011 to serve the 11
affected villages (Department of Health and Family Welfare 2011). In addition, the
BUDS schools provided occupational and rehabilitative services to the children
attending those schools (Special Correspondent 2011). However, there is a need for
greater documentation and evaluation of these experiences to facilitate learning.
Palliative care to provide relief to the very ill victims was also being supported.
Two nurses, each specially trained in palliative care, and one physiotherapist were
posted in each of the affected panchayats. The necessary equipment was also pro-
vided. A vehicle was provided at each panchayat for local travel of this team
(Department of Health and Family Welfare 2011).
Finally, approaches to strengthen local health systems were strategized. The pro-
posed measures were (Department of Health and Family Welfare 2011):
–– Additional salary incentives for doctors to work in primary and community
health centres in affected areas of Kasaragod.
–– The physiotherapist assigned to the panchayat will also be affiliated with one
PHC which will have a physiotherapy unit.
–– Modernisation of the two large district hospitals was undertaken, which included
fully equipped physiotherapy unit, advanced lab investigation facility and train-
ing centre for special education.
–– A plan for making more ambulances available was also proposed.
92 A. Pradyumna and J. Chelaton

It was reported that these were undertaken at a cost of over Rs. 1.3 crores (The
High Court of Kerala 2015). A key informant stated that the initial steps in these
aspects were positive, with convergence of systems of medicine, support of doctors
to the Cell and diverting of more resources from the National Rural Health Mission
(NRHM) to these areas keeping the special need in mind. An endosulfan nodal offi-
cer was also appointed, who helped bring evidence into discussions and decision-­
making to reduce further threat from existing stocks of endosulfan locally, with
support from the revenue officials and state pollution control board in 2012. The
Food and Agriculture Organization guidelines for managing obsolete pesticides
were used, and the initiative was titled Operation Blossom Spring (Misra and
Rehman 2012; Staff Reporter 2012). Reportedly, research was conducted on sec-
ondary data on the impact of endosulfan which helped further planning and decision-­
making, but it is unclear whether these studies are available in public domain.
Decontamination is an important and expensive process and has been shown to be
complicated especially in other cases in India (such as at Bhopal and Kodaikanal).

I dentification of Victims: Comprehensiveness and Associated

Challenges

Based on initial understanding, at least 12 panchayats in Kasaragod were affected

(District Panchayat Kasaragod, 2005b). However, in a 2011 state government report,
the total number of affected villages is mentioned as 11 (Department of Health and
Family Welfare 2011). It is unclear from these documents how the decision on
“affected” villages was made. The adopted methodology should be made available
for public viewing as there is scope for great learning for students and practitioners
of public health. Even lesser is known about the impact of the aerial spraying pro-
gramme on villages in the neighbouring Puttur taluk of Karnataka state. Endosulfan
has become synonymous with Kasaragod, and Puttur may have been lost in transla-
tion. Communities in the latter had been demanding for victim identification even
as of 2015 (Sanjiv 2017). This paper has not explored the impact and relief interven-
tions in Puttur, which itself would be a very important and useful exercise.
When the Kerala chief minister wrote his letter in 2006 declaring budgetary allo-
cations for endosulfan relief, the Health Department had identified a total of 1996
victims, of which reportedly 103 were “severe cases” (Government of Kerala 2006).
Of these, 63 had needed surgical care, which was provided at Kasturba Medical
College, Mangalore, and the costs for the care and hospital stay were covered by the
Cell (Pradyumna 2009). Local primary health centres were engaged in identifying
individual victims at village level by the Cell. By the end of 2008, reportedly over
250 aids such as wheel chairs and hearing aids were distributed to the identified
victims. Also, 123 families had received lump sum compensation towards death of
affected persons, and a further 300 families that had applied had been approved for
similar compensation (Pradyumna 2009).
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 93

Only in 2010–2011 was an “active” search conducted for victims through house-­
to-­house surveys and 17 specialty medical camps (at least 1 in each affected pan-
chayat, to further identify, confirm, treat and provide smart cards). This effort
involved 300 doctors from medical colleges and primary health centres. These
camps appear to have been organized well, with detailed registrations managed at
several counters, general practitioners screening and appropriately referring cases
to specialists and specialists in separate rooms assisted by nurses. Arrangements
were also made for basic lab investigations, dispensing medicines, follow-up and
also lunch and refreshments for camp attendees. Assistance was provided for trans-
porting patients to the camp and back to their villages, supported by local health
workers and the village panchayats. A total of 15,698 people attended the camps
(Department of Health and Family Welfare 2011). It is unclear why it took few years
after the setting up of the Endosulfan Victims Relief and Remediation Cell to orga-
nize this camp, keeping in mind the potential medical and social costs that people
may have already borne. However, a proposal was put forth, and the implementation
was started in 2011 to waiver medical loans of impacted families (which were on
average Rs. 50,000 among households which were impacted, as identified through
the house-to-house socioeconomic survey) (Department of Health and Family
Welfare 2011). As of 2015, the government reported having waived loans of 1191
applicants (The High Court of Kerala 2015). The “lag time” in relief has severe
implications at various levels for impacted families of any disaster. Also, the high
court was very clear on not making loan waiver lists public due to fear of stigma on
those households (The High Court of Kerala 2015).
In addition, the full range of impacts is unfathomable. For instance, there is a case
of a father leaving the family due to the birth of three children with disabilities
(Venugopal 2008). People of all ages and gender have been affected to varying
degrees. Some children have such disabilities that they constantly need the presence
of a caregiver (usually the mother in the case of impacted families in Kasaragod), and
so livelihood was severely affected (Venugopal 2008). How does one quantify “bro-
ken families” and “lost time”? It is precisely these types of challenges that necessitate
critical learning from the Kasaragod endosulfan tragedy so that any future disasters
are managed much better and even prevented all together wherever possible.
At the medical camps held in 2010–2011, the inclusion criteria set for endosul-
fan victims were these (Department of Health and Family Welfare 2011):
–– History of exposure.
Occupational
Nonoccupational
Mother to child
–– Established health effects of endosulfan based on over 140 peer-reviewed papers
on the health effects of endosulfan. This included impacts on:
Nervous system
Endocrine system
Reproductive health
Genotoxic and mutagenic impacts
94 A. Pradyumna and J. Chelaton

Carcinogenicity
Immune system
Others
–– Benefit of the doubt for inclusion in the list was given to the patient.
Despite perceptions among political leaders and others that almost all deaths in
the area were being inappropriately attributed to endosulfan, it was still felt that err-
ing on the side of the people was the better thing to do, as they felt that the victims
should not be missed, and in addition, the affected people were “so poor” (Venugopal
2008). As in the case of most environmental tragedies (for instance, Bhopal gas
tragedy and climatic disasters), the bulk of the impact is faced by the poor.
It may sound mundane, but it never gets old: prevention is better than cure. As
the tragedy was not prevented, the costs of including even those who may not have
been victims will have to be borne, as it would be unethical to miss even a single
victim. The costs of relief and rehabilitation were probably a lot more than the sav-
ings of the aerial spraying programme. Minimising negative externalities are critical
for distributive justice.
A total of 3435 persons were initially identified as probable victims of endosul-
fan exposure. For patients who were unable to make it to the camps, but had been
identified in previous surveys and camps, additional follow-up visits were conducted
by medical officers, and using the same criteria, 838 more persons were identified.
Support and benefits were being received by these 4273 persons as of February 2011
(Department of Health and Family Welfare 2011). For those persons who were nei-
ther identified in previous surveys nor had attended the camps, a system was set up
as follows: applications can be submitted at any time by patients to the Endosulfan
Victims Relief and Remediation Cell (which was now called Sneha Santhwanam
Cell), which will then be forwarded to the District Medical Officer. This officer in
turn instructs the local PHC medical officer to examine the patient and provide a
report (or alternatively directly visit a nearby government health institution, accord-
ing to a key informant). Based on that, a second level of screening and allotment to
different departments is done by a district team (according to a key informant), and
then the DMO then refers the case papers to a committee of experts which will
review submissions in periodic intervals to make a decision about the case. Of the
1097 applications received until February 2011, 738 were examined by the commit-
tee, and 257 were included as probable victims of endosulfan. This list of patients
was further sent to the District Collector for address approval, so that support can be
initiated (Department of Health and Family Welfare 2011). In 2013, two additional
detailed guidelines on temporality and biological plausibility were added to assess
cases, and based on this, an additional 337 probable victims were added to the list
(according to a key informant). This robust system was essential to ensure the best
possible screening for potential victims. However, it is unclear how the information
regarding the camps was communicated to local people. That would be interesting
to learn towards developing a protocol for future remediation ­programmes in India
and elsewhere. In 2015, the high court in Ernakulum expressed satisfaction at the
systems in place for victim identification (The High Court of Kerala 2015).
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 95

After a gap of 4 years, a camp was held in 2017 to assess new applicants to the
remediation programme, and this was attended by 3884 people. It was also felt by
members of the Cell that it would be useful to institute a tribunal for addressing
grievances of victims (The Express News Service, 2017). It is unclear why there
were gaps in the reviewing of applications, as systems had been set up quite well.

The Role Played by Local People and Local Government

It was indeed local people who initially recognized the problem. A local journalist
Shree Padre first wrote about this issue. Then it was a local physician, Dr. Mohan
Kumar, who documented cases in his area and wrote about it in various forums. Ms.
M.K. Leelakumari Amma, who previously worked with the Agriculture Department
at village level, took legal action at a local sub-court due to deterioration of health
of her children and herself (Pradyumna 2009). Local protest groups such as
Endosulfan Spray Protest Action Committee (ESPAC) and Endosulfan Virudha
Samithi (with support from established NGOs) also took the campaign forward
(District Panchayat, Kasaragod 2005b). It was the local court’s order for temporary
stoppage of spraying (in 2001), the high court’s support to that judgement (in 2003)
(Department of Health and Family Welfare 2011), and pressure from people that led
to the ban at state level.
Creating awareness and mobilising local people about relief activities in affected
panchayats were done largely by the local self-government through oral communi-
cations, letters and notices. While it was perceived that some households may have
been missed during the home visits for notifying about relief activities, it was felt
that most households were covered as local people knew affected households and
that multiple communication methods ensured good dissemination. It was also per-
ceived that following the initiation of relief activities, the presence of activists
reduced and that politicians had taken over the oversight of the activities (Venugopal
2008). No lifespan was decided for the Cell, which was opined to continue to func-
tion as long as a need was felt by the people (Department of Health and Family
Welfare 2011; Pradyumna 2009).
There were also proposals in 2011 to start a rehabilitation centre (or village) for
those victims who did not have caregivers, vocation training for those victims with
physical handicap and a residential special school with day care facilities for those
intellectually challenged children (Department of Health and Family Welfare 2011).
A key informant stated that 25 acres of land had been transferred to the Social
Justice Department and designs had been approved, and it is progressing.
The relief and remediation activities have mobilised resources from various
departments including Health, Civil Supplies, Social Welfare, Local Self-­
Government and Education (The High Court of Kerala 2015). This also ­corresponded
with the presence of various sub-committees in the Endosulfan Victims Relief and
Remediation Cell at Kasaragod. It would be useful to document the convergence
processes of this multi-stakeholder experience.
96 A. Pradyumna and J. Chelaton

Another aspect that needs to be looked into is the repeated “surveying” of the
population. Around the year 2000, in response to civil society pressure, 11 commis-
sions were appointed by the central and state government to understand about the
situation in Kasaragod. In parallel, enquiries were being made by the local NGOs
and activists (Department of Health and Family Welfare 2011). Subsequently, sev-
eral surveys were also conducted to identify victims. It is unclear how these repeated
enquiries may have impacted local people. Also, protocols to respond to putative
disease clusters exist in literature, especially for cancer clusters (which perceived to
be linked to toxic chemicals) (CDC 2013; Goodman et al. 2014). It was felt by the
Kerala Government that the ICMR report was an important one that laid to rest most
doubts about the case (Department of Health and Family Welfare 2011). It could be
considered whether such a cluster examination team should be set up at ICMR for
any future cluster reports from various parts of India. A key informant stated that
activist-led follow-ups of initiatives became more visible and the district adminis-
tration did not receive as much support from the state to implement recommenda-
tions of the NHRC.
To summarize the role played by various actors, a local journalist recognised the
potential hazard; a local physician recognised the biomedical problem; local peo-
ple came together to form a campaign and to arrange for relief; some local people
registered cases; the state government responded to court orders and took actions;
local government helped bring various stakeholders together to design a relief and
remediation programme, and this was then implemented using state and local
resources, with the health systems contributing in implementing the programme;
and finally local groups and the NHRC ensuring some oversight on the progress of
these measures. To summarize key arguments of this section, the relief and reme-
diation programme at Kasaragod was imperative. The lives of so many families had
been so deeply affected, and providing support was the least that could be done.
However, even while this case shines as a beacon of hope for several affected
regions in India, it was not without its share of technical, logistical and ethical chal-
lenges. The constant pressure by local people, scientists and technical groups, and
court orders, and the electing of a sympathetic chief minister contributed to the
planning and implementation of this programme. Values of social justice have been
considered to ensure free treatment and additional support to victims and caregiv-
ers. Medical professionals and advisors, over a period of years, have been able to
refine the system for identification of victims and subsequent care, which is very
important if justice has to be ensured. Unfortunately, victims from some areas will
be missed (for instance, those from neighbouring taluks of Karnataka and those
who migrated). There are no clear measures that have been proposed for them. It is
also unclear to what extent funds collected by local groups were utilised for the
welfare of the affected as there are no documents in the public domain about this.
All in all, the history of the relief programme is worth documenting in greater
detail through robust evaluations (using realist lens) to help develop future public
health policies.
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 97

 ecision-Making in Designing Programmes of Other Sectors:

D
Reflections

“But so far we do not have concrete and scientific evidence that will stand in a court
of law which will squarely implicate the PCK (Plantation Corporation of Kerala)
and the producers of endosulfan” was the statement made by a district-level govern-
ment official (Venugopal 2008). A similar comment was made by the Indian delega-
tion who were reportedly the only country against the ban on endosulfan, stating the
lack of scientific evidence of harm (NHRC 2010). In addition, a 2011 petition at the
high court in Ernakulum by the workers stated that endosulfan did not cause the
effects seen in Kasaragod (The High Court of Kerala 2015). This was unfortunate as
it was clear from an epidemiological perspective that aerially sprayed endosulfan
was the culprit. In effect, this may have less to do with science and more to do with
other drivers, as was recognised by the NHRC (2010).
In 2010, Mr. Achuthanandan, the then Chief Minister of Kerala, wrote a letter to
the Prime Minister of India urging India’s support towards the banning of endosul-
fan at the Rotterdam Convention as India had not supported the ban in earlier meet-
ings potentially due to the endosulfan export market in India and its associated
lobby (Achuthanandan 2010). This letter was also in response to a letter sent by the
Endosulfan Manufacturers and Formulators Welfare Association to the Prime
Minister maligning the work and credibility of scientists and NGOs in establishing
endosulfan as the causative factor of adverse health effects in Kasaragod. He added
about the potential long-term contamination and intergenerational impacts of the
pesticide exposure too. He requested the search for safer options in the interest of
people and the environment (Achuthanandan 2010). While the union agricultural
minister claimed that several states wrote to him to not get endosulfan banned, it
became clear through a right to information enquiry that none of the state govern-
ments wrote to him, and it was actually groups related to endosulfan producers and
users primarily from Gujarat who did (Misra 2011).
At a recent event on endosulfan at Kasaragod which was attended by the chief
minister of Kerala, a former worker with the Plantation Corporation of Kerala was
holding a placard in support of the use of endosulfan and was subsequently jailed.
The chief minister’s words were that no one is “scared of them” (Kayyar 2017).
This statement clearly reflects the issue of “power” in the context of decision-­
making. Just like in research ethics, where efforts are made to protect the subjects
as the researcher is perceived to be more “powerful”, the same should hold good for
developmental interventions. Economic growth may be important for generating
livelihoods, but it can be done in a way that is conscious of people’s health and
environment sustainability.
Currently there isn’t a clear legal space for open discussions with local people for
proposed interventions of this nature. With the existence of the 73rd and 74th
amendments to the constitution, the gram sabha in rural areas and the ward sabha in
urban areas should be forums for these kinds of discussions. However, these are
rarely used, either by project proponents or by local people. An approach that is
98 A. Pradyumna and J. Chelaton

being used is to critique the draft EIA reports for projects and present the findings
of the critique at the public hearing (either orally or in writing, if they have them).
For other projects, it is entirely up to the proponent to invite health experts to par-
ticipate in the proposal development and assessment. Some private companies take
it up as a matter of internal policy (and to be consistent with guiding principles such
as the Equator Principles) (Birley 2011).
Resnik listed the key principles of environmental health ethics as human rights,
utility, justice, animal welfare, stewardship, sustainability and precaution (Resnik
2012). The issues of human rights and precaution have especially been cited by the
NHRC in their recommendations document for two aspects: when the temporary
ban was made by the high court (also see (The High Court of Kerala 2015)) and
subsequently when several developed countries from across the world banned it
(NHRC 2010). The NHRC has an important role to play in environmental health
ethics, but so far the role has been remediation rather than prevention and mitiga-
tion. It appears that all principles were violated in the design of the spraying pro-
gramme. Fortunately, in the relief and remediation programme, most of these values
have been incorporated. This list of principles is useful in conducted HIA for future
programmes with potential health impacts. For the case of Kasaragod, technically,
the stoppage of aerial spraying was probably as important (or more) as the ban on
endosulfan itself. If the PCK had continued the spraying programme with another
pesticide, it is likely that a new set of health and other effects may have been seen.
It was important to mitigate the exposure and the hazard.

Towards Reducing Avoidable Disasters

“Are not the perpetrators out in the open?” asked a journalist in his article, respond-
ing to the government officials who were asking for charity to financially compen-
sate victims (Venugopal 2008). As of 2008, no new cases of mental retardation,
seizures, disability and cancer had been documented since the year 2000 by four
health officers at PHCs in the affected areas (Pradyumna 2009). The exact details of
the decision-making process used (including whether health impact was consid-
ered) to finalise endosulfan aerial spraying model for the cashew plantations in
Kasaragod were not available to us. There is some insight on an economic analysis
equating 1 day of aerial spraying to 500 worker days. There was also an underlying
drive towards agricultural “modernisation” (Satheesh 2017), indicating that the
push for the model came from a narrow economic perspective.
Domain expertise, either in agriculture or narrow economics, is not adequate to
make a fully informed decision. This is a lesson in retrospect, but there are multiple
case studies that lessons are learned late or actions are delayed for various reasons
(European Environment Agency 2013). However, there is some evidence on techni-
cal recommendations in India, from as early as 1991, to keep endosulfan away from
areas where there are waterbodies (CSE 2016). But it is unclear to whom these
national guidelines were directed to and how they were to be implemented. Literature
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 99

also provides anecdotal insights on plantation officials getting “notices” removed

(these were printed to inform local people about precautions during spraying)
(Satheesh 2017), which is very unfortunate but not surprising to hear. The callous-
ness becomes even more terrifying while learning that children would come out of
homes and schools during spraying operations, with the hazardous droplets falling
directly on them and getting into their food plates and water. It was also discussed
by local people that plantation officials would send their children home during the
operations (Satheesh 2017). This points towards a crisis of professional ethics in
program design and implementation.
Some of the things decision-makers could potentially have done is to consult
health experts on both the toxicological and exposure aspects of aerially sprayed
endosulfan. Such a consultation may not have been resource intensive and also the
potential solutions may have been rather simple. For instance, these suggestions
may have reduced the impacts:
–– Define the proposed spray area, identify if any households or waterbodies are
located in the vicinity, and direct the helicopter to avoid those areas (alternative
pest control methods would need to be used in those areas).
–– In addition, have a fixed schedule for the spraying, use a siren before spraying is
initiated, and inform local people to strictly avoid coming outdoors during and
immediately after the spraying operations.
It is likely that there are several other potential suggestions and there is a need for
the public health community to encourage such action. There is a potential role of
local people in monitoring any such interventions or projects. To have completely
avoided any kind of health impacts, endosulfan should not have been sprayed aeri-
ally. In addition, chemical pesticides could have been avoided completely, but the
technical feasibility of this can be better discussed with domain experts. In more
recent times, great advances have been made in agroecological farming, and such
approaches could be used even more easily in the future. Agroecological farming
approaches are recommended by the UN Special Rapporteur on the Right to Food
(De Schutter 2010). Company managers and government (local, state and national)
officials who design and evaluate proposals should consult health professionals
trained in Health Impact Assessment (HIA) to mitigate any potential health risks.
The NHRC too is an important institution in the context of public health ethics and,
in this case, had made several recommendations towards an endosulfan ban in India,
compensation for victims and remediation and support measures (NHRC 2010). An
expert panel appointed by the court in 2013 had also recommended a phasing out of
the use of endosulfan in 2 years in India (HT Correspondent 2017).
The discussions here have solely focused on the issues of aerial spraying of
endosulfan. Local people faced other challenges from the health determinants per-
spective. For instance, when the plantations were being modernised, access of local
people to those previously “common” lands was stopped which affected collection
of manure and fuel wood. In addition, the impact on the local ecology, with the
disappearance of bees and several other creatures, also affected livelihoods
(Satheesh 2017).
100 A. Pradyumna and J. Chelaton

 ealth Impact Assessment as a Potentially Useful Approach

H
in Ethical Public Health Decision-Making

The type of health and social problems faced by impacted local people in Kasaragod
is very serious in nature. For instance, having children with neurodevelopmental
problems would mean lifelong impact on the child and also for the caregivers. The
count of only these cases was 1624 as of February 2011 (Department of Health and
Family Welfare 2011). Surely this calls for concerted effort to prevent such
catastrophes.
HIA for any proposed project or programme is useful for the simple reason of
bringing in “health” as a consideration in the decision-making process to mitigate
potential risks. Indeed in India the Environmental Impact Notification exists to pro-
tect human health and environmental health (Ministry of Environment and Forests
2006), but unfortunately it only applies to industrial projects of a particular kind
(those included in the notification). The scope for this should be broadened, and, in
addition, the procedure for the HIA needs to be strengthened. Currently the focus is
mainly on environmental and social impact assessments, which may not be done
professionally either (Pradyumna 2015). The perception of public health in the sec-
tor as well as popular imagination relates to health services (governmental hospi-
tals) and programmes. In reality, those aspects relate more to disease than health and
are associated with less than 5% of the country’s GDP. It is the other 95% that
determines the health of people, and so other sectors also require scrutiny from a
health perspective (Birley 2011). Also, the NHRC has stated the importance of pre-
caution and human rights as important values to consider to protect health (NHRC
2010).
The challenge is: What projects need an HIA? What should be the scale of the
project? Specifically here, if a lesson should be learned from the HIA perspective, it
could be that the proposed interventions (especially in plantation-type agricultural
situation) that use hazardous chemicals that may potentially be exposed to local
people (nonoccupational groups) should be examined for toxicity, potential routes
of exposure to the local population, etc. It is important to understand that HIAs are
not meant to stop projects but to identify potential health-related risks and suggest
ideas to mitigate them (Birley, 2011).

 esponsibility, Resources and Sustainability of Relief

R
and Remediation Programmes

A reading of the 2015 High Court of Ernakulum judgement on the various petitions
filed in the context of endosulfan in Kerala is illuminating. Several petitions have
been filed by interest groups and caregivers of putatively affected persons and even
counter-petitions by the workers association of the plantation corporation (The
High Court of Kerala 2015). This is an unfortunate outcome of a potentially
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 101

preventable situation. While the judicial system is of paramount importance, lessons

from the Kasaragod experience are important to identify how better and transparent
systems can be put into place to ensure that the judicial system is only the last resort.
The government asked the PCK to contribute an amount of Rs. 53 crore to the relief
fund, and though there was a petition against this by the workers association of the
PCK (in lieu of the bad financial situation of the PCK), “considerable amounts”
were donated (The High Court of Kerala 2015). This was important from the justice
perspective.
Insights from key informants suggested that new cases of cancer, seizure, mental
retardation and disability had been reducing as compared to before as of 2009
(Pradyumna 2009). It is possible to say that the removal of the exposure has
improved health outcomes of the local people (warranting further epidemiological
trend studies). However, those who have been affected will continue to live with
disability, and there is a need for continued support. This was recognized by the
group that met at the consultation workshop (District Panchayat, Kasaragod 2005b),
and it was stated that the relief and remediation plan would need to be implemented
for at least 30 years (District Panchayat, Kasaragod 2005a). The word “justice” was
used in the plan document. It is unclear why specifically 30 years was stated, but
such deliberation is important to ensure sustained financial allocation and support
from health services.
Legal heirship has provided a challenge in the compensation of next of kin of
victims who died. Also, the high court has instructed banks to not harass potential
victims as long as their application for loan waiver has not been resolved (The High
Court of Kerala 2015). In addition, the detailed protocols developed for identifica-
tion of victims also become important as people may continue to approach the Cell
for relief measures. For instance, a newspaper article from 2017 quoted a mother
who was convinced that her child of 13 (born 4 years after the cessation of spraying
operations) had repeated fevers and diarrhoea due to endosulfan (Sanjiv 2017). It is
likely that this may not be a case of endosulfan impact, and so the protocols become
important. However, it shows an important dimension of “fear” that may exist
among people in this area about reproductive and child health, and mechanisms to
address these emotions should be built into the remediation programme. This could
potentially have several mental health impacts on many local people if ignored.
Finally, it is important that other marginalised groups are not affected due to human
resource and budgetary allocations towards endosulfan relief (The High Court of
Kerala 2015), and so it would always be important to examine responsibilities and
sources of resources. Other state-led insurance schemes have been made available
for persons who need to access health services (The High Court of Kerala 2015).
102 A. Pradyumna and J. Chelaton

Conclusions

The Kasaragod District document on the relief and remediation plan states “…such
disasters should be avoided at whatever costs, in the name of humanity” (District
Panchayat, Kasaragod, 2005a). As has been seen, the costs of disasters are large –
both to the impacted families and the government. Cost-cutting practices eventually
catch up, and someone lands up paying a heavy price. As of 2017, efforts towards a
national ban on endosulfan continue to strengthen, but local people and the govern-
ment should not focus only on endosulfan as the culprit. Indeed it was a constella-
tion of poor decisions that led to the tragedy. There is a role for environmental and
health considerations in decision-making about developmental and industrial proj-
ects. The government, which has the primary mandate of furthering people’s inter-
ests, is in the best position to institute robust health and environmental impact
assessments. This also has been explicitly discussed as part of the Sustainable
Development Goals (UN 2015).
At Kasaragod, several surveys and camps have taken place. Thousands of vic-
tims have been identified, treated and compensated. Services to support healthcare,
rehabilitation, vocation and education have been put in place. Unfortunately, pro-
cess evaluations (if any) have not been communicated publicly. It is important for
India to learn from Bhopal and Kasaragod – both towards preventing such disasters
and responding to them. At the end of the day, ethical values are critical in both
those levels of interventions (precaution itself being an ethical value). In addition,
as may have been noticed, most of the information in this chapter has been cited
from grey literature, which again points to the missed opportunities by academics to
learn lessons from these health and management processes and outcomes, and write
in peer-reviewed journals.
Health professionals, who were involved at every stage of the experience at
Kasaragod (identifying the disaster, campaigning for action, planning and imple-
menting relief and remediation and treating patients), have a critical role to play.
Environmental health ethics can guide decision-making to protect people as long as
we can systematically learn from past experiences and value health.

Acknowledgement We would like to thank Dr. Mohammed Asheel from Kasaragod for provid-
ing additional insights on the relief and remediation programme.
Conflict of Interest Statement Jayakumar has been involved with the Ban Endosulfan campaign
since the late 1990s and is the Director of the Pesticide Action Network India. Adithya is part of
the steering committee of the Pesticide Action Network India since 2013. Neither of them receives
any financial or other compensation from PAN India.
5 The Endosulfan Tragedy of Kasaragod: Health and Ethics in Non-health Sector… 103

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 Part III
Ethical Issues in Public Health Research
Chapter 6
Conducting Qualitative Research in/on
Health Systems: Ethical Tensions,
Confounders, and Silences

Surekha Garimella and Lakshmi K. Josyula

Abstract This chapter focuses on the authors’ experiences of doing qualitative

research in and on health systems and complexities. The relationship between
researchers and research participants, set in a widely prevalent positivist mind set,
with researchers often having to struggle to get across the message that there is not
one correct answer or “complete” information that is being sought, but often subjec-
tive perspectives, are elaborated. Tensions in the design and conduct of research in
health systems in India, including the difficulty in maintaining the rigour of in-depth
interviews and focus group discussions sometimes, and dissonances encountered at
times between certain accepted (Western) tenets of ethics, e.g. individual autonomy
and privacy, in certain research and practice situations in the field are not uncom-
mon and go to the heart of researching ethically and in a rigorous manner. In view
of the fact that research is conducted into problems, and most data are of problems,
dysfunction, and inequity, the researcher may often feel the disparity in the condi-
tions of the researcher and the researched, and may frequently have to consciously
disengage and recharge. We will elucidate the dynamic nature of the researcher’s
experience, and highlight the importance of reflexivity when using qualitative
research approaches in doing health policy and systems work.

Keywords Health policy and systems research, ethics committees · Research

relationships · Perceptions of roles of researchers · Informed consent · Power
differentials

S. Garimella (*)
Adjunct Faculty, Institute of Public Health, Bengaluru, India
L. K. Josyula
The George Institute for Global Health, Hyderabad, India
e-mail: [email protected]

© Springer Nature Singapore Pte Ltd. 2018 107

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_6
108 S. Garimella and L. K. Josyula

Introduction and Background

There is an acceptance that research can play a vital and necessary role in under-
standing and strengthening public health, and health systems. While there is an
overlap of definitions of health systems research, implementation research, and
operational research, the broad canvas of health policy and systems research (HPSR)
is increasingly being used as it recognizes the complex interconnections between
health policy and systems and the political and social nature of the field (Sheikh
et al. 2011). HPSR is also identified as a “transdisciplinary field” allowing it to draw
from different disciplinary traditions and methodological approaches (Sheikh et al.
2014). HPSR recognizes that health systems are suffused with complex institu-
tional, social, political, and individual relationships and practices. Qualitative
research is seen as an appropriate approach to use for research questions that are not
amenable to measurement in HPSR, in order to make sense of these complex rela-
tionships and practices in this field. The aims of qualitative research are normally
characterised by the “what”, “how”, and “why” of a phenomenon (Green &
Thorogood, 2004) lending themselves well to the examination and investigation of
complex relationships in health systems. As Denzin and Lincoln (2000, p. 8.) note,
qualitative research has “an emphasis on the qualities of entities and on processes
and meaning that are not experimentally examined or measured in terms of quantity,
amount, intensity and frequency”. Qualitative research, therefore, is best perceived
as a social process of negotiations that researchers enter into, starting from concep-
tualization of the issue to be researched to entering, staying in, and exiting the
research site, and writing up findings.
Ethics and ethical processes are a fundamental part of qualitative research,
and embody principles of beneficence, non-maleficence, protection of individuals’
identity and dignity, justice, and an accurate and verifiable presentation of research
findings (Baez 2002; Hennink et al. 2011; Spiezale et al. 2011). Ethical issues in
qualitative research are different from those in quantitative research, and often sub-
tle. Some of these pertain to potential ethical conflicts that exist in relation to how
researchers gain access to study participants, and the failure of researchers to
address ethical issues can result in their being ill-prepared for the unpredictable
nature of qualitative research. Qualitative researchers mainly focus on exploring,
examining, describing, and analysing people in the real world, and embedded in this
are notions of power between the researchers and the participants (Posel and Ross
2015; Richards and Schwartz 2002). Since qualitative studies are mainly conducted
in everyday environments, researchers are expected to be ethically literate and
aware of possible ethical issues that may arise in these settings. Decisions that
researchers make about ethical issues that are anticipated at the research planning
stage and those that unfold during the conduct of the research are influenced by
multiple factors including disciplinary norms, professional guidelines, ethical and
legal regulations, and individual/team moral and ethical positions (Wiles and Boddy
2013). In an insightful reflection on researching public health and medical practices
ethnographically in Nepal, Harper (2007) opines that “codes of ethical practice are
prescribed in the light of judging particular events, frequently ones that have
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 109

occurred in the past. They are reworked, recoded and rewritten while looking back
to past digression and anticipating possible regulatory futures”.
Due to the transdisciplinary nature of HPSR, there is increasing attention to the
ethics in the conduct of such research, much of it focused on ethics guidelines and
recommendations relevant to HPSR. Commentators opine that ethics committees as
they are currently set up are not equipped to deal with ethical issues particularly
relevant to HPSR (Hyder et al. 2014a). To facilitate and advance a discussion on
ethical issues in health systems research, Hyder et al. (2014a) have published an
initial framework. Highlighting the challenges involved in weaving together a
coherent understanding of the ethics of health systems research, they make a case
for the need for more empirical and conceptual research aimed at better understand-
ing of health systems research ethics (Hyder et al. 2014b). Ethical issues that emerge
in the process of conducting HPSR are not well understood, and even less under-
stood are the influences of contexts (local, political, social, and individual) on these
issues. But, as Molyneux et al. (2016) note, ethical dilemmas and challenges that
emerge through the course of conducting HPSR studies are related to social rela-
tionships, often involving complex imbalances of power within research teams,
between research teams and health system personnel, and between field teams and
community members.
There is a vast reservoir of literature on questions of ethics in qualitative research
in health, and it focuses on disciplinary guidelines, philosophical and theoretical
deliberations on appropriate ethical research practice, and professional code of eth-
ics. However, in the areas of public health and HPSR, even simple descriptive writ-
ings on experiences of ethics in research and practice are hard to come by. Reflections
of ethical conundrums and conflicts that “arise in the thick of fieldwork, when
researchers have to respond as human beings as much as exponents of disciplinary
ethical codes, and when the unanticipated complexities of social relationships in the
field throw up the latent tensions or ambiguities in the codes themselves” (Posel and
Ross 2015, p. 1) are very rarely written about and shared. It is this unsettling and
personally challenging aspect of ethics in practice that we hope to elaborate.
In this chapter, we share and discuss ethical issues that we faced while conduct-
ing an exploratory study on posting and transfer (P&T) policies and practices in the
health sector in four Indian states, from the year 2014 to the year 2016. The objec-
tives of this study were to investigate policymaking for postings and transfers in the
government health sector, and implementation of the policies as experienced by
different health system actors, and stakeholders. One of the key questions in this
study was how health system actors practise and experience P&T. We used a quali-
tative case study approach, with in-depth interviewing, to elicit experiences related
to postings and transfers among health system actors, including district health sys-
tem administrators, doctors, nurses, laboratory technicians, and pharmacists. We
explored their personal experiences with postings and transfers, the impact that they
perceived of the postings and transfers on their professional and personal lives, and
their perceptions of the rationale for postings and transfers. Specifically, we reflect
on our experiences of conducting qualitative research on the health workforce in
India, and share some of the ethical tensions and disconcertment that we experi-
110 S. Garimella and L. K. Josyula

enced while doing the study. This is a reflexive account of selected issues related to
our experiences with ethics review, seeking permission from the states to be able to
conduct the study and those relating to participation and consent. This account is put
together from the many discussions and conversations that we had while conducting
the study, and after its completion, and is based on our individual experiences.
Reflexivity can be seen as a bridge between procedural ethics and the everyday
practice of qualitative research. It is closely connected to the ethical practice of
research that comes to play in the real world, and an ongoing process that saturates
every stage of research (Guillemin & Gillam, 2004). Being reflexive means being
involved in a continuous process of critical scrutiny and interpretation, not just in
relation to the research methods and the data but also to the researcher, participants,
the research context, and the interpersonal aspects of research.

 rocedural Ethics: Negotiating Research Ethics Review

P
Boards and Seeking Approval

Ethical regulation of disciplines and the production of ethics codes have varied
motives, which include protecting the people being studied, preserving and promot-
ing the image of the discipline in question, and defending it against unrealistic
expectations and complaints (Hammersley and Traianou 2012). In recent decades,
the centre of attention has moved to organizations where researchers work, and
whom they have to deal with in carrying out research, for example, research insti-
tutes, universities, and research sites, including health systems and health service
delivery sites. Institutional review boards have been set up in many organizations,
and although most of them are primarily concerned with biomedical research, other
research with social science approaches also come under their purview. The opera-
tion of institutional review boards is prospective in nature; therefore, these review
committees hold the power to determine whether or not a research project can go
ahead. For researchers like us working in the field of HPSR, and using social sci-
ence approaches, this means dealing with review committees that may not be as
well equipped to identify and evaluate ethical issues that may arise in this type of
research (Hyder et al. 2014a). Some researchers have long been debating and rais-
ing concerns about ongoing moves towards highly regulated systems of review
(Dingwall 2008; Hammersley 2009; Israel and Hay 2006). They have expressed a
concern that high levels of scrutiny will foster uniform approaches to ethical issues
such as anonymity and informed consent that avoid any level of risk and pose a
threat to good social research, particularly for researchers who use qualitative
research approaches. Other researchers focus on the importance of researchers
engaging with review systems and informing the committees about methodological
and ethical issues and observe that these review spaces have an educative function,
helping researchers become more ethically literate (Iphofen 2011; Wiles et al.
2011).
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 111

While acknowledging the difficulties in dealing with review boards, we feel that
an important and essential signpost for any research study is its submission for
review of its ethics and its scientific, methodological validity. This process involves
familiarising oneself with the ethics review forms, and responding to anticipated
ethical issues while filling them and putting them up for review to an ethics review
committee. The application includes a detailed protocol, consent forms, and research
tools, and completing an application form that incorporates a discussion of the
anticipated ethical issues. Adherence to the process is crucially important: without
ethics approval, research is not permitted to proceed. “Ethics review is relatively
unique in that it forms a kind of ‘anticipatory regulation’ (Hedgecoe 2012) – it
assesses the likelihood of serious ethical issues arising in future if research is con-
ducted in the way it is described in the protocols submitted for review. As such, it is
based on trust that investigators will conduct research exactly as described (De
Vries and Henly 2015, p. 76)”.
For us, this provided an opportunity to think through and foresee ethical issues
that we could face, and how we could deal with them. This, we feel, is a necessary
and useful exercise, and it also indicates that the research team is ready to be exam-
ined by the ethics committee. The ethics review forms that we had to fill were more
representative of ethical and methodological issues related to biomedical and public
health research, and, as Hyder et al. (2014a) note, this is a common issue that HPSR
researchers have to navigate. For instance, power relations, which played an impor-
tant role in the ethical conduct of our research, did not feature in the review forms.
Also, standard ethics approval is undertaken as a one-time event with periodic
reporting and renewal, not quite addressing the dynamic, often uncertain, process of
dialogue between researchers and researched that evolves throughout the research.
Another aspect of this process is that all of the correspondence between the team
and the ethics review panel was managed electronically. We never came face to face
with the review panel and never knew the composition of the panel and the nature
of the discussion when our form was reviewed. In hindsight, we feel that researchers
and research teams can benefit from having access to discussions that take place
among panellists reviewing the ethics application forms or being part of the discus-
sions wherever possible. This will allow for a dialogic space to open up between
researchers and review boards where both can benefit from one another.
Although ethics review boards scrutinize research proposals, the researchers are
ultimately responsible for anticipating and addressing ethical issues that arise in the
course of conducting research, especially those of protection of their participants.
How researchers practise ethics is affected by the extent to which they are able to
anticipate and address issues of distress and anxiety that may be experienced by
participants; their adherence to confidentiality codes, and ability to ensure ano-
nymisation of participants, considering that qualitative information is full of clues
to identities (Richards and Schwartz 2002); their ability to avoid misrepresentation
and misinterpretation of information shared by participants; and researchers’ pre-
paredness to address these issues. The main issues that we had to attend to were
those of informed consent, and risk to the participants, and how we would antici-
pate and mitigate risks. The forms did not ask and address risks to the researchers
112 S. Garimella and L. K. Josyula

themselves in doing the study, much less power relations among the researching
team, the state bureaucracy, the health system, and prospective participants in our
study. And, as we will elaborate, power relations were crucial to some of the ethical
issues that we faced while conducting the study.

State Permissions and Gatekeeping Conundrums

In the build-up to obtaining permission from the states, we had started working on
the protocol and settled on a research approach that was qualitative in its inquiry,
and would use in-depth interviews to understand the experiences and relationships
of various health system actors. Our experience in obtaining permission to conduct
the study in the states was rather complicated. In some states, the authorities in
charge of research approval were good-humoured and favourably disposed towards
the study despite having doubts about the relevance of the work to them. These
doubts arose since this was qualitative research, and they were unsure how it would
generate recommendations, which was the study output that they were most inter-
ested in. Nevertheless, they gave us their approval possibly because we were from
an organisation that was extensively networked with state governments, and, in fact,
had other ongoing work with them. We also knew health professionals and bureau-
crats through other work that we were involved in and therefore had an accommo-
dating audience even though we were not always in accord with them about
knowledge generation methodologies. In other states, despite the same scenario as
stated above, we had to engage in difficult and long negotiations and bring in very
senior colleagues to these negotiations to reach an agreement. A great deal of pres-
sure was exerted on the research team to change the focus and methodology of the
study. Here too, it was a case of qualitative research being seen as a poor cousin to
the more influential quantitative, metric-oriented research.
A salient feature across the authorities in all states was their perception of what
research is and the role that researchers should play. In the field of HPSR where
researchers research the health system, cross paths and work with policymakers,
differences in perceptions of what is research, and how to conduct it between
researchers and policymakers can be a source of tension. This is especially so when
there is a strong perception that qualitative research is simply storytelling, and
therefore of little value for policymakers. Although, this tension is not insurmount-
able, it places additional responsibilities on the researchers to communicate the
value of doing qualitative research. This can be a long drawn-out and difficult nego-
tiation process, dealing with entrenched beliefs while allaying fears and dispelling
unsubstantiated perceptions. This proved to be disconcerting, but a learning experi-
ence for us as a research team as we negotiated with very powerful authorities who
included senior policymakers and health officials at the state level to address some
of the concerns that they raised and, at the same time, protect and maintain the
integrity of the research that we wanted to conduct. The relation between the
researcher and the researched is a recurrent concern in qualitative research literature
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 113

with a strong emphasis on the privileged position of the researcher vis-à-vis the
researched. In the case of HPSR, it may be pertinent for researchers to reflect seri-
ously on the issue of ‘mode of entry’ into health systems for doing research, and
how this can influence accessibility to the researched, and researcher positionality.
People vested with the power to grant permission to undertake studies are crucial
and powerful gatekeepers, whose influence on the access and the integrity of the
research, and the use of the information from the study, goes far beyond merely
signing and issuing a letter of permission. Health systems and services have strong
hierarchical bureaucratic structures that rest on top-down communication and infor-
mation, and institutional privileging of statistical evidence over field-based experi-
ences. For example, the voices and experiences of health workers and other
implementers are hardly taken into account and rarely thought to constitute evi-
dence for public health policies and programmes. This is both premised upon, and
feeds into the mistaken tendency within the field of public health to dismiss such
qualitative forms of enquiry as insufficiently rigorous to inform public health policy
and practice (Mishra 2014; Storeng and Mishra 2014).
An issue that is intertwined with permission-seeking and the power of gatekeep-
ers that raised ethical concerns for us was the identification of the specific geo-
graphical districts where we would conduct the study. Confidentiality, a key
component of qualitative research, requires the research team to be very careful
about anonymising not only the participants’ names, but also any other identifiable
markers. While gatekeepers in some of the states were not particular about obtain-
ing all particulars of our study locations, in others, they wanted to know which
districts we were going to select for the study. The concern and tensions that we
experienced because of this were twofold. Firstly, it was about our ability to protect
the identities of participants, who were frontline workers in the districts in the pub-
lic health system, when the authorities already knew where we were going to con-
duct the study. Secondly, we were concerned about whether and how the authorities
could influence what the frontline workers would share with us. We were unable to
find a way out of this and had to come to terms with the fact that we could not do
anything about the administrators knowing the locations of our study. The only way
we could deal with this was to anonymise the details of the participants and their
experiences when coding and synthesizing data.

Participants and Consent

For our study, we had to talk to a range of frontline health workers including medi-
cal officers, nurses, community health workers, pharmacists, technicians, facility
level administrators, and bureaucrats located at the state level. We selected this
broad range of health system actors in order to thoroughly explore policymaking
and implementation experiences of posting and transfer policies in the health sys-
tem. The process of recruiting participants was a multilayered experience that came
with its own set of ethical dilemmas. In some states, we were given a free hand to
114 S. Garimella and L. K. Josyula

talk to anyone we chose, whereas in others there were patent attempts to influence
which individuals we could talk to. We reasoned that this could have been because
of the subject matter we were researching. Postings and transfers in public health
systems are sensitive subjects as they reflect on issues of accountable and transpar-
ent governance. The intent to influence the choice of participants by gatekeepers
was possibly based on the expectation that the individuals the gatekeepers recom-
mended to us would give positive accounts of their experiences.
A particular dilemma we faced in relation to this is that there are specific, limited
numbers of posts in some of our participant categories in the sites selected for the
study, and therefore we had to interview some individuals even though we did not
expect them to be sufficiently expressive and informative about their experiences.
The onus then fell on us to be more vigilant when conducting the interviews.
Individuals’ decisions to participate in research may not always be in line with the
notion of voluntariness, which is a key principle of research ethics. This principle
advocates that individuals should be able to decide for themselves, with as little
influence as possible by others, whether to participate or not. But, in hierarchical
organizational structures such as in health systems, decisions to participate may not
be entirely voluntary, and individuals may volunteer to participate because they do
not want to go against their superiors. This issue is most critical to the least powerful
in the hierarchy.
Another factor that may influence participation is the presence of the researchers
themselves. When doing field work in health systems, the researchers are a visible
and available entity because of their physical presence and can influence the choice
to participate. In some states, we needed the help of individuals to help us with
identifying and setting up interviews with participants. These were mid-level execu-
tives, trusted by the administrators and frontline workers alike, people well respected
in the system, who helped us gain access to participants and probably also influ-
enced the decisions of individuals to participate in the study. We tried to deal with
this by having an honest dialogue with the gatekeepers so that the participant selec-
tion process was transparent and as open as possible.
Following the identification of prospective participants, informed consent is
sought before interviews can take place. Informed consent is a core concept in ethi-
cal research practice, and a fundamental principle underpinning guidelines for
researchers. In its most basic interpretation, it involves providing clear and compre-
hensible information about what participating in the research project will involve
and giving prospective participants the opportunity to decide whether or not they
want to participate. Clarity is provided on the following: what the research is about,
and why it is being conducted; who is funding the study; what participating in the
research will involve, including potential risks and benefits; what efforts will be
made to protect participants’ identities, and how confidentiality and anonymity will
be managed by the research team; and how the results of the study will be used. Of
vital importance is the researcher’s duty to clarify that the prospective participant is
not obliged to take part in the study and, once having consented to participation, can
withdraw from the study at any point, with no penalty. Although this appears clear
and straightforward, in practice, researchers have to deal with a range of factors
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 115

when managing issues of informed consent. For example, we contemplated how

much choice the participants actually had to refuse to participate in our study, since
we went in with officially approved letters stating that we had been given permis-
sion to talk to people. No one whom we approached for participation refused to
participate in our study. Some of the interviewees were open, expressive, and volu-
ble. Some others appeared hesitant to discuss their posting and transfer experiences,
and asked for confirmation during the interviews that their identities would indeed
be kept confidential. Some of our participants expressed apprehension that their
hitherto smooth record of no hierarchical interpersonal tensions in the workplace
might be threatened by our discussions of the sensitive topic of posting and transfer.
These observations led to our feeling unsure of the role that informed consent actu-
ally played in individuals’ accepting to be part of the study.
An observation that has stayed with us in relation to the conduct of interviews in
HPSR is that the sanctity of the in-depth interview was sometimes violated by hier-
archically superior health system actors. For instance, a health system administra-
tor, who introduced the researchers to a mid-level or frontline worker, sometimes
entered the interview room in the course of the interview and participated in the rest
of the discussion, patently affecting the candour of the interviewee and rendering
some of the “interview” not truly fit to be analysed as an interview. We recognized
that this intrusion, which amounts to gate-crashing, was not executed with any dam-
aging intent; rather the gate-crashers were clearly exerting themselves to help us.
Often interviewees or gatekeepers would invite a colleague into the interview to
provide “better” and “correct” information on the matters that we were studying,
not quite grasping the fact that we were exploring people’s individual perceptions,
experiences, and interpretations, and not aiming to get at any particular objective
truth on postings and transfers. A clear understanding of the goals of research, as
distinct from fact-gathering in implementation and evaluation of health system
work, was lacking in the majority of the health system actors whom we interacted
with. Our attempts to explain that we were trying to understand the perceptions and
experiences of people, and not gather statistics and metrics, seemed sometimes to
do our image a disservice, indicating that we were engaging in an investigation with
neither concrete variables nor proximate benefits to the health system.
Many frontline workers, especially persons with low autonomy, took the pres-
ence of researchers asking unusual questions – such as those about professional,
interpersonal, and individual experiences, opinions and philosophies of work, and
suggestions for improvement – as an opportunity to express their perceptions and
aspirations fully and freely. They described their gratification with the policies and
practices that promoted their wellbeing, and spoke of their angst at the policies and
practices that they felt were insensitive to their needs and disenfranchised them. In
our conversations with them, we frequently found that they were looking to us to
communicate their case to the powers-that-be, and hoping for our advocacy to
strengthen their representations to the authorities. This additional expectation of the
role of advocate or broker placed on the researchers tended to sit uncomfortably on
us, in our inner tussle between the objectivity and reflexivity required of a researcher
116 S. Garimella and L. K. Josyula

and the empathy that we could not help feeling as we interacted with, and under-
stood the experiences of the interviewees.
Informed consent in research operationalises autonomy. It is commonly under-
stood as the right of individuals to make their own choices, and is a fundamental
value in Western societies. Our experience of researching in health systems suggests
that the hierarchical structuring of the health system is a very alive and palpable
context that influences the right and choices of participants in their decision-making
to consent or not, as we have elaborated above. This issue needs more discussion
and thinking through among researchers in HPSR.

The Researcher-Researched Relationship

There is rich and wide-ranging literature on the relationships between the researcher
and the researched in qualitative health research, social sciences, and feminist
research. A recurrent concern in this literature relates to what is seen as a fundamen-
tal and inherent imbalance in this relationship, specifically the privileged position of
the researcher vis-à-vis the researched. The ethical issues associated with this power
imbalance are elaborated upon, with a focus on predetermined asymmetric roles.
There is also an emphasis that all qualitative traditions have a common epistemo-
logical ground which is the researchers’ determination to minimize the disparity in
this relationship (Karnieli-Miller et al. 2009). While we acknowledge the existence
of an imbalance, in relation to our study, we have had to question whether the
researcher is always located in a privileged and superior position in relation to the
participants. The range of participants included in our study meant that we were
both “studying up” (the bureaucrats, administrators, and medical officers who are
the more privileged in the health system) and “studying down” (nurses, community
health workers, pharmacists, technicians, and other allied personnel who are the less
privileged in the health system).
Nader (1969/1972) launched the dichotomy of studying up/studying down per-
taining to researcher positionality, holding that studying up contributes in vital ways
to an understanding of the processes by which power and responsibility are exer-
cised. Beyond informing our understanding of patterns of distribution, value, and
power, the researcher who is “studying up” may experience moving into a research
field of less “control” or “power,” so the approach calls for new reflections on the
issues of access, methodology, attitudes, and ethics (Nader 1969/1972, p. 301;
Pfeiffer and Nichter 2008). In simple terms “This refers to the study of those in
power (policy makers and influential stakeholders), those subjected to the directives
of those in power (parties charged with implementing programmes downstream as
well as programme recipients), and those who are motivated to frame, fund, and
publicise research for a myriad of purposes” (Ahlin et al. 2016).
We wanted to study up to understand how power and responsibility are exer-
cised in influencing the policy and implementation of postings and transfers.
Studying down was also important because we wanted to bring out voices that are
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 117

usually not given due importance in health systems. While studying up and studying
down, we experienced fluidity in relation to how we found ourselves positioned in
relation to the participants. Studying up did not always put us in a vulnerable posi-
tion, and studying down did not always put us in a superior position. With some
participants, there was a clear delineation of power that we held, whereas with oth-
ers it was very fluid and changed during the course of the interviews. Sometimes
powerful participants exhibited vulnerability when detailing their own personal
experiences of transfers, while the less privileged in the system positioned them-
selves in a superior space in relation to us by clearly choosing to be very generic in
their accounts and stonewalling any attempts to elicit nuanced narratives. Given our
experience, we believe that a more nuanced and fluid understanding of the
researcher-researched relationship is needed. Accepting that power exercised in
these relations is dynamic and complex will allow room for discussions around how
the researched are perceived, and more discursive accounts of the modalities of
power associated within this relationship will emerge, to be shared (Smith 2006).
In view of the fact that research is often conducted into problems, and most data
are of problems, dysfunction, and inequity, the researcher may often feel the dispar-
ity in the conditions of the researcher and the researched, highlighting the predica-
ment of the participants further. We found ourselves in this situation time and again
distressed at the circumstances that some of our interviewees lived and worked in,
particularly those of our participants who experienced an intersection of multiple
disadvantages, such as of gender, social status, cadre, and type of employment con-
tract. We had to consciously disengage after the interviews and recharge, as we
traversed, in our minds, waves of activism, advocacy, optimism, problem-solving,
and disenchantment. In addition, because we were researching a sensitive topic with
considerable social, organizational, and personal ramifications, we sometimes came
up against clashes of our own ideologies with those of our interviewees. In such
situations, we had to proceed with composure and maintain our reflexivity in the
manner and extent of data elicitation, as well as in the interpretation of information.
For instance, we conducted some interviews with persons trained in the same or
allied academic discipline as a member of the research team, and this commonality
facilitated greater openness and understanding as the interview progressed. In some
interviews, on the other hand, the interviewee expressed views adverse to the aca-
demic disciplines, or personal creeds, of the research team members, engendering a
conflict of values, which while we did not articulate in the interview, nonetheless
struggled with internally.

Concluding Thoughts and Reflections

In this chapter, we have attempted to share our experience of conducting HPSR

using a qualitative research approach in a study that focused on experiences of
health workers, administrators, and bureaucrats, in relation to posting and transfers
of personnel in the health system, and some of the attendant ethical issues that we
118 S. Garimella and L. K. Josyula

encountered. We have shared descriptive accounts of our experience in relation to

ethics review committees, particularly their unfamiliarity with the field of HPSR,
leading to their being ill-equipped to foresee and deal with ethical issues peculiar to
HPSR; seeking permission from states to conduct the study; ethical issues that arose
in relation to recruiting participants and obtaining consent; and the fluid and
dynamic nature of power in the researcher-researched relationship. We focussed on
these issues to highlight the fact that relational concerns across the research process
are often critical in determining the ethical questions that researchers have to engage
with and influence the practice of ethics.
There are calls in the area of HPSR for embedding research in the real world of
policy, practice, and implementation in order to strengthen health systems (Ghaffar
et al. 2017). This is advocated on the basis that research conducted in partnership
with policymakers and implementers in health systems, with attention to context-­
specific factors, will have greater relevance for the system. While this is ideal, in the
real world of research, this thought and practice are not always universal. Alongside
advocacy for context-sensitive research approaches in HPSR, there is ongoing
advocacy for identifying and conceptualising ethics issues and a push towards
building suitable oversight mechanisms of HPSR (Hyder et al. 2014a, b). From our
experience on interactions with ethics review committees, we strongly feel the need
for a more dialogic and open-ended interaction between researchers and these com-
mittees, researchers and health systems policymakers and implementers, as well as
among researchers on ethical issues in a transdisciplinary field such as HPSR.
Conversations around these issues have been initiated through the thematic
working group (TWG) on ethics in HPSR1,2 under Health Systems Global (HSG),
an organization that is advocating the field of HPSR. Research in Gender and
Ethics (RinGs) is another network which focuses on gender and ethics analysis in
health systems (http://resyst.lshtm.ac.uk/resources/ethics-health-systems-research-
selected-guidelines-and-studies).3 In addition, as HPSR researchers we are respon-
sible for inculcating ethical mindfulness in our approaches. The relational issues
that we have raised are accorded greater emphasis in social sciences and feminist
research ethics, and a deeper engagement with this literature would strengthen a
move towards more nuanced ethics of practice in HPSR.

Acknowledgement The chapter draws on data collected as part of the project based in the Public
Health Foundation of India between 2014 and 2016 when we were working there as members of
the research team on “Accountability at the Frontlines: Posting and Transfer Practices in the Health

1
http://www.healthsystemsglobal.org/twg-group/9/Ethics-of-Health-Systems-Research/
2
This working group seeks to build awareness of and interest in the wide range of ethics guidance
and literature that is potentially relevant to HSG members; identify ethical dilemmas experienced
over the course of funding, planning, conducting, disseminating, and reviewing diverse forms of
HPSR; and share ideas on how relevant ethical theories and principles might be applied to support
practice and contribute to guidance for HPSR stakeholders and to contribute scholarly work to the
global discourse on health systems ethics and HPSR ethics, especially in LMIC.
3
http://resyst.lshtm.ac.uk/resources/ethics-health-systems-research-selected-guidelines-and-
studies
6 Conducting Qualitative Research in/on Health Systems: Ethical Tensions… 119

System, Strategic Health Partnership for Universal Health Coverage (Governance and Regulation)”.
We are grateful to the research participants, who stimulated many of these perspectives, as well as
to the field assistants with whom we had several conversations that led to the insights that we have
presented here. We would like to acknowledge Gupteswar Patel, Bhaskar Purohit, and Kabir
Sheikh from the research team conducting this study. We appreciate the collegiality in the Health
Governance Hub, which nurtured our meditations on ethics in the conduct of HPSR. The reflec-
tions shared in this chapter are personal and our own.

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Chapter 7
Data Ethics in Epidemiology: Autonomy,
Privacy, Confidentiality and Justice

Vijayaprasad Gopichandran and Varalakshmi Elango

Abstract Epidemiology is an essential tool of public health, which largely relies

on collection, collation, analysis and interpretation of data and actions based on the
information gleaned from the data. Such data-intensive processes lead to unique
ethical issues relating to autonomy of the data generator, privacy, confidentiality and
justice. In this chapter, we attempt to describe the ethical issues in data handling in
epidemiology using two examples, public health surveillance and Big Data analyt-
ics in digital epidemiology. One of the unique ethical issues that arises in public
health surveillance is the difficulty in operationalizing autonomy, as any individual
refusing to share surveillance data will compromise the effectiveness of the surveil-
lance. The need to balance the benefits of health security with the risks of infringe-
ment into individual privacy and confidentiality lies as the undercurrent of the ethics
of public health surveillance. Big Data analytics is becoming increasingly popular
in public health. The rich variety of the data, while offering chances of multilevel,
multivariate analysis of disease models, also raises concern of biases in data collec-
tion due to huge variations in the sources of the data. The high velocity of the data
also throws open opportunities for rapid analysis and interventions to improve pop-
ulation health. The power of Big Data analytics needs to be harnessed with the
important ethical principles of public health in mind.

Keywords Big Data · Digital epidemiology · Electronic health records · Privacy ·

Confidentiality · Data protection

The original version of this chapter was revised. A correction to this chapter is available at
https://doi.org/10.1007/978-981-13-2450-5_11
V. Gopichandran (*)
Department of Community Medicine, ESIC Medical College & PGIMSR, Chennai, India
V. Elango
Drugs for Neglected Diseases initiative (DNDi) and World Health Organization (WHO),
Chennai, India

© Springer Nature Singapore Pte Ltd. 2018 121

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_7
122 V. Gopichandran and V. Elango

Introduction

Large-scale population-based epidemiological research, epidemiological data col-

lection, epidemiological surveillance and such activities which are data intensive
are an integral part of public health practice. While such population-based data col-
lection is a powerful tool for understanding the health status, disease epidemiology,
resource availability and health needs of a population, access to such important
health-related data opens up several ethical issues. Firstly, access to large datasets of
personal and identifiable health information from populations can impinge on indi-
vidual privacy and confidentiality of data. It raises fundamental ethical questions
such as: Who owns the data, who can access the data, and how should the data be
protected? Secondly, collection of such data, as part of routine public health activi-
ties, often is mandated by the public health authority of the state, and there is often
little autonomy or choice for the individual. Moreover, for epidemiological data to
be most useful, it should be comprehensive. This means that the data from all people
in the population should be available for analysis. This leaves little choice for indi-
viduals to opt out of providing their data. Thirdly, whether such data collected under
the mandate of public health activity can or is being used for other research pur-
poses raises an important ethical concern. Therefore, when the state has ethical
responsibility in the spirit of stewardship to ensure the health security of a country,
it is difficult to prioritize autonomy of individuals in contributing to epidemiological
data. These ethical considerations and dilemmas make ethics of public health and
epidemiological research unique.
The first part of this chapter will address an important epidemiological activity,
namely, public health surveillance, and illustrate with examples the key ethical con-
siderations in this activity in the Indian context. The second part will address a more
recent trend in epidemiological research, namely, digital epidemiology and Big
Data analytics. Using these important public health activities as examples, the chap-
ter will explore issues of data privacy, confidentiality, justice and equity in epide-
miological research.

Public Health Surveillance as an Epidemiological Activity

Public health surveillance (PHS) is the close scrutiny of health status and factors
that could impact the health of the population. The 600-year-old idea of surveillance
was refined and described in its modern form by William Farr. The World Health
Organization (WHO) defines public health surveillance as “the continuous, system-
atic collection, collation, analysis and interpretation of health-related data needed
for the planning, implementation, and evaluation of public health practice”
(Abraham et al. 2017). Public health surveillance is conducted for a variety of pur-
poses; to name a few, it allows to monitor disease trends, identify the onset of epi-
demics, observe changes in disease-causing agents like influenza or “drug-resistant
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 123

bacteria”, prioritize diseases that require intervention, assess the impact of interven-
tion and measure the progress (Brownstein et al. 2009). In 2007, 196 member states
signed up to the International Health Regulations (IHR) 2005, and in this context,
surveillance serves as a key early warning system for identifying public health
emergencies of international concern (Buse and Hawkes 2015). Being signatories to
and having the obligation to comply with the IHR, most low- and middle-income
countries are establishing their own public health surveillance systems with or with-
out support from external donors. As an epidemiological activity, PHS is performed
through several modalities, namely, passive disease reporting by health workers,
health-care facilities and laboratories, sentinel surveillance from specific sites cov-
ering targeted cohorts, secondary non-surveillance data from health management
information systems, demographic and health surveys and health insurance data-
base and digital data sources such as social media, Internet web services and
e-­commerce websites (Dean 1999). PHS, which has become an essential public
health activity, has several important ethical considerations. The following para-
graphs will describe the ethical considerations in PHS.

Ethical Considerations in Public Health Surveillance

Autonomy, Privacy and Confidentiality

Autonomy has been a highly contentious ethical issue in PHS. Informed consent has
been the hallmark of upholding the principle of autonomy of people when they
participate in research activities. Obtaining informed consent from the people for
purpose of using their data for PHS is difficult to operationalize given the massive
numbers of people usually contributing their health data to the PHS. Moreover,
when large numbers of people refuse to share their data for PHS, it may compro-
mise the quality of the PHS. Sometimes blood, tissues and fluids are collected as
part of routine surveillance, and the participants often give their samples with a
perception that it is part of health-care service provision. In low- and middle-income
country settings, with low literacy levels, the people sharing their data and samples
often do not know that a surveillance is ongoing. The autonomy of the person con-
tributing the data is compromised for the sake of the larger good of the community.
Another matter of particular concern is the use of such data and samples for research
purposes other than surveillance. This is because the participants who contributed
data did not provide the data or samples for the sake of research to begin with. Their
understanding, if any, was that it was part of service provision. In case of unlinked
anonymous testing (UAT) for HIV, the situation is worse, as the patients do not even
get to know their HIV status at the end of the surveillance testing activity. These
circumstances place PHS at a very precarious position when it comes to respecting
the participants’ autonomy.
PHS, as an essential public health activity, entails the collection of personal and
private medical information from people in order to serve a larger common good. As
124 V. Gopichandran and V. Elango

mentioned previously, sometimes the people are not even aware that their private
health-related information is collected for purpose of surveillance. They are also
often unaware that this identifiable private information may be accessible to
researchers and public health officers for purpose of interventions. Therefore, ethi-
cal safeguards to the individual’s autonomy, privacy and confidentiality of sensitive
medical information are essential while conducting PHS. It is also important to
assess if the extent of infringement into the privacy of an individual is proportional
to the common good that is achieved by the surveillance.
A historical anecdote in the 1980s at the time of the beginning of the HIV epi-
demic in India provides deep insights into the ethics of PHS. Routine sero-­
surveillance of women involved in sex work was established at that time. One of the
authors of this chapter was working in a medical college microbiology department
at that time, and she was witness to the events that are described below. The women
involved in sex work were brought from their respective homes and paraded in the
microbiology laboratory of the big medical college without any concern for their
privacy. Their blood samples were drawn and tested to identify HIV serology. The
author has witnessed several such instances of women being tested in medical col-
lege departments without any privacy safeguards. The fear of HIV and the looming
threat of a smouldering pandemic were so great that issues of autonomy, privacy,
and confidentiality took a secondary priority. Though the risk of HIV was high and
need for the surveillance immediate, it also warranted acute attention to ethical
safeguard measures to protect the women’s privacy and confidentiality, which were
violated. Therefore, in order to protect these ethical principles, there is a need for
rigorous ethical scrutiny of PHS.

Responsiveness of the PHS to Local Health Needs

As seen previously PHS aims to produce a common good which ensures health
security to the community. Therefore, such an activity has to be responsive to the
local needs of the community. India is currently facing a dual burden of disease
including both communicable and non-communicable diseases (Fidler and Gostin
2006). The PHS should target both these types of diseases. Often, donor-driven
vertical surveillance systems in low- and middle-income countries cater to the prior-
ity needs of the donor country and global priorities. A typical example for this was
the Millennium Development Goals (MDG); three major diseases including HIV/
AIDS, tuberculosis and malaria had been given top priority (Government of India
2017). There are several other diseases like dengue, leprosy and leptospirosis which
were not prioritized for surveillance (Hartley 2014). Now the Sustainable
Development Goals (SDG) target a broader spectrum of diseases such as AIDS,
tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-­
borne diseases and other communicable diseases. While this is an important consid-
eration at the macro-policy level, there are important issues at the micro level as
well. One such issue is human resources for surveillance.
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 125

Human Resources for Surveillance and Conflicts of Interest

The Integrated Disease Surveillance Program (IDSP) utilizes the services of the vil-
lage-level frontline workers such as auxiliary nurse midwives (ANM), multipurpose
health workers and Anganwadi workers to report cases of illnesses from the commu-
nity. These workers are often overburdened1, and this may compromise the quality of
PHS. There may be conflicts of interest of the community health worker as she is the
same person who is providing preventive services and hence reporting of illness may
reflect negatively on her quality of work. The following example, witnessed by one
of the authors in her experience, illustrates the ethical importance of proper utiliza-
tion of human resources for surveillance. In the early 1990s, a paediatrician working
in a government hospital in Tamil Nadu, India, was given a punitive memorandum for
not reporting a child with acute flaccid paralysis (AFP). It was a period when inci-
dence of polio was high in India and the National Polio Surveillance Program (NPSP)
was actively tracking cases of AFP. All paediatricians were mandated to report cases
of AFP that they saw in their practice. Unfortunately, information about the activities
of NPSP and modalities of surveillance were not widely disseminated among the
paediatricians in the country. While paediatricians from cities and towns had the lux-
ury of exposure to the information, those practicing in rural and remote areas had no
way of knowing the details of the surveillance. Like in most instances, surveillance
inputs were maximum from government health facilities, and private health facilities
remained oblivious of the surveillance activity. This example highlights the impor-
tance of proper engagement with all stakeholders in the surveillance for the surveil-
lance to be appropriate. The state has a responsibility to create due processes and
systems to ensure proper conduct of surveillance. Punitive action on the surveillance
staff in the absence of appropriate supportive supervision can impair the morale of
the staff and thus compromise the quality of the surveillance. Apart from respect to
individuals and procedural ethics, justice considerations are very important in PHS.

Justice Considerations in PHS

In one of the most backward districts of Tamil Nadu in terms of health indicators, in
the early 2000s, there were a number of cases of fever with rash among children
below 5 years, including several deaths, due to a mysterious febrile illness. The

1
The auxiliary nurse midwife is the backbone of the public health function in India. Her primary
responsibilities include registering pregnancies, issuing antenatal card, performing antenatal visits
and visiting the mother at her home, dispensing iron and folic acid tablets, giving her tetanus tox-
oid injections during pregnancy and motivating her for institutional delivery. She does home visits
immediately after delivery, initiates breastfeeding, monitors the baby, immunizes the children till
2 years of age, advises on contraception and provides contraceptive methods to the eligible couple.
In addition, she also maintains meticulous records of all the maternal and child health activities in
numerous registers. She is also often required to perform additional duties like communicable and
non-communicable disease prevention and control activities. She is in charge of a total population
of 5000–10,000.
126 V. Gopichandran and V. Elango

press had captured this information and had created a kind of panic. Further analysis
had revealed that most of the cases of this mysterious febrile illness were reported
from the Dalit (scheduled caste) colonies of the villages. Further investigation of the
outbreaks revealed that it was a measles outbreak. The village health worker in this
area had been informed of this illness very early on but failed to investigate or report
it. Inquiries revealed that the health workers did not intervene fearing punitive
action. Further investigation into the situation also revealed a gross neglect of health
services including immunization, antenatal care, care of children under 5 years and
family planning services in the Dalit colonies. This case study brought to the fore-
front certain deep-rooted social justice issues in public health surveillance. The fact
that a surveillance system was present but did not capture the early warning signals
is evident. Firstly, there was a gross failure of the surveillance machinery due to
failure of the health worker to report the illness among the children in the Dalit colo-
nies due to her role conflict as health provider and as surveillance reporter. Moreover,
the inadequate surveillance was evident in the Dalit community, as the health worker
had systematically neglected all activities spanning from basic health care to sur-
veillance in the community. Establishment of a good PHS must ensure that all mem-
bers of the community are reached by the surveillance and the common good that is
accrued due to the surveillance is distributed to all the members equitably.
The other issue closely related to justice is the availability of necessary standards
of care in the community where surveillance is carried out. In the Dalit community
described above, marginalization based on caste had systematically deprived the
community from required standards of care. Therefore, establishing a robust sur-
veillance system in this area would be unfair as there is a lack of concomitant provi-
sions of care for those identified with illness. In parallel to development of a PHS,
there should be strengthening of health services in the community (Heymann 1998).
Having a robust surveillance system in the marginalized community, without ade-
quate standard of care, would unevenly distribute the burdens and benefits of the
PHS activity. While the villagers belonging to the other castes will benefit from the
surveillance, the Dalit community will bear the burden of loss of autonomy, privacy
and confidentiality without any actual benefit.
One of the challenges has been the limited availability of guidelines for ethics in
public health surveillance. Ethics of public health is a recent development in the
global public health arena. The fine line of differentiation between public health
research and action further confounds the understanding of ethics of public health.
There are several important ethical guidance documents for health research includ-
ing the Declaration of Helsinki, Council for International Organizations of Medical
Sciences (CIOMS) and International Council for Harmonization-Good Clinical
Practices (ICH-GCP) (Hoerbst and Ammenwerth 2010; Idänpäaumln-Heikkilä
1994). The CIOMS also brought out the ethical guidance for epidemiological
research, but PHS, which lies in the interface between research and public health
practice, falls within the gaps in the ethical guidance. Most recently WHO has pub-
lished a guideline on the ethical issues in public health surveillance which will serve
as a useful tool for member states for setting up public health surveillance systems
and the ethical oversight mechanisms (Jetten and Sharon 2016).
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 127

Ethical Oversight in Public Health Surveillance

The most contentious issue is whether PHS is research or not. This has been the
subject of extensive debate in literature. It is difficult to draw a definitive line
between surveillance and research. Like research, surveillance involves the collec-
tion of data from individuals or community, the analysis of which provides evidence
for decision-making. In this sense, it poses risks similar to that of research. And if
surveillance poses risk to all those individuals, patients or communities who have
contributed their data, there is a need for ethical oversight to review if these risks
justify the common good and how these risks could possibly be mitigated.
As PHS is not clearly considered a research activity, public health practitioners
do not include it in regular research ethics scrutiny. In the absence of alternate
review mechanisms, ethical oversight is often not performed. Therefore, there is a
need for ethical review systems for PHS. In this regard, the Public Health Ontario
has formulated a framework of ten guiding questions that allow for ethical reflection
of all public health evaluative activities. These questions guide the practitioner to
assess the following ethical considerations:
• The stated objectives and how the intervention proposes to address the
objectives
• Whether the proposed intervention is capable of achieving the objectives
• A clear understanding of who the beneficiaries of the intervention are
• A clear understanding of the burdens and benefits of the intervention and the
specific groups of people who will enjoy the benefits and suffer the burdens
• Justification for the potential burdens and harms in light of the benefits of the
intervention
• Fair and impartial selection of participants in the intervention
• Considerations of individual autonomy in terms of informed consent – feasibil-
ity, appropriateness and sufficiency
• Considerations of community engagement
• Social justice considerations
• Potential long-term consequences
This is a valuable tool for those setting up and reviewing the merits and ethical
considerations of a public health surveillance (Kintu et al. 2005).
Whether there should be a separate model of an Ethical Review Committee for
public health interventions and activities in India is a matter for discussion. Building
the capacity of existing Ethical Review Committees in the country to review public
health research and surveillance protocols may be more feasible and efficient in the
immediate future.
Another challenge is the fact that LMICs, where the need for public health sur-
veillance is the highest, do not always have the capacity even for ethical review of
research protocols. This calls for capacity building of ethical committee members
and public health practitioners in being able to better understand the ethical issues
and apply the nuances of ethical principles in the context of public health
surveillance.
128 V. Gopichandran and V. Elango

In a country like India, the Indian Council of Medical Research and the
Department of Health Research, Government of India, after due consultations with
the various stakeholders, should institute appropriate ethical oversight mechanisms
for public health evaluative activities in general and public health surveillance in
particular. Closely related to PHS and oftentimes contributing to PHS as a data
source are digital epidemiology and Big Data. The next section discusses the ethical
nuances in digital epidemiology and Big Data analytics.

Digital Epidemiology and Big Data Analytics

Traditional methods of epidemiological research are fast being replaced by modern

technology. In the past, epidemiology was practiced dominantly by primary data
collection. Researchers in the field collected health-related data and analysed them
to discern patterns in terms of burden, distribution in time, space, person and deter-
minants of diseases. The advent of computers and computer-assisted statistical data
analysis marked a transformation in the practice of epidemiology. More complex
data could be handled and analysed and led to better understanding of patterns of
disease. In recent years, there is a near-ubiquitous proliferation of Internet access in
most parts of the world. A large segment of the population also has access to mobile
phones. The advent of the Internet and ease of data access has heralded a new age
of epidemiology, the era of digital epidemiology (Lee et al. 2012).
Digital epidemiology is the use of digital electronic devices, Internet connectiv-
ity network and cloud computing capacity for studying disease burden, disease pat-
terns and determinants (Liang et al. 2014). Application of digital technology for
epidemiology has provided several advantages. Firstly, it has made data collection
and handling easier, faster and more accurate. Software like the Epi Info, developed
and distributed by Centres for Disease Control and Prevention, Atlanta, USA, have
been used for many years now effectively to investigate outbreaks and conduct epi-
demiological investigations (Mahapatra 2017). Newer versions of the software have
been developed as Android application which can be accessed through mobile
phones, tablets and other hand-held devices, thus making data collection and han-
dling very easy. In addition, health systems are establishing health management
information systems (HMIS) which help in monitoring, learning and evaluation of
public health programs (Ministry of Health & Family Welfare 2016). The Mother
and Child Health Tracking System (MCTS) is one such database for tracking the
health and wellbeing of mothers and children in the community from pregnancy up
to 6 years of age of the child. Community health workers in many settings are using
mobile applications and hand-held devices to collect and update health management
information system data for effective public health-care delivery. Hospitals are also
developing their own electronic health records of individual patients, which help in
maintaining digital records of all patient encounters, thus making documentation
and access to patient data easier for the treating physicians (Ministry of Law and
Justice (Legislative Department) 2016). The availability of such immense volume of
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 129

health data in the digital format has led to improvements in epidemiological research
capacity. Health-related information from these variety of data sources serve as
potential epidemiological data. They help in early and real-time detection of out-
breaks of diseases, understand patterns of diseases and even study associations
between diseases and risk factors.
Another emerging area of digital epidemiological data is health-related behav-
iour data from social media. Social media platforms like Facebook, Twitter, etc.
have huge volumes of data on health-related behaviours. These can provide infor-
mation on behavioural linkages with health (MMWR 2012; Noble et al. 2012). In
the era of cashless and digital commerce, purchasing practices also leave a whole lot
of digital data trails. Thus, purchasing behaviours which have a direct implication
on health care also can be obtained from this digital data. For example, Twitter feeds
on influenza have been used in assessing patterns of seasonal influenza outbreaks
(Public Health Ontario 2012). Similarly, data on purchase of sugary carbonated
beverages and high-calorie foods can provide information on non-communicable
disease risk in communities.
With advent of Global Positioning System and geospatial mapping, another
potential area of digital data is easily available for epidemiological analysis (Salathé
et al. 2012). With a large majority of people having mobile phones with geographi-
cal positioning capacity, disease clustering, geographical patterns in disease out-
breaks, etc. can be easily tracked. Satellites are also constantly monitoring the
weather and climatic conditions as well as the environmental conditions such as air
and water quality. These data are also available in the digital format for epidemio-
logical studies.
The combination of all these types of data can assist understanding of complex
disease patterns and trends. In this context, it is important to understand what Big
Data is. Big Data can be defined as large pools of complex data from multiple
sources that can be collected, communicated, collated, stored and analysed (Salerno
et al. 2017). The characteristic features of Big Data are that it is of high volume,
produced at high velocity, in a huge variety of formats, with doubtful veracity and
huge variability in the magnitude of data with time. In other words, Big Data is
enormous and very messy (Sarasohn-Kahn 2008). The fact that it is voluminous, of
huge variety and nearly real time in generation is of immense advantage in epidemi-
ology as it helps discern disease patterns in a timely and accurate manner. However,
the fact that it can be unmanageable because of its volume and variety and of doubt-
ful veracity can limit its utility (Signorini et al. 2011). Digital epidemiology derives
very strongly from Big Data analytic capacity as described above. There is immense
potential for linkage of various databases. The data from electronic health records
and health management information system can provide disease burden informa-
tion. This can be effectively linked with the behavioural data from social media,
environmental and geospatial data and interesting patterns identified. The data can
be stored and computed in digital clouds and easily retrieved from the cloud. This
further eases the process of Big Data analytics and provides a huge potential for
application in epidemiology (Unique Identification Authority of India 2016).
130 V. Gopichandran and V. Elango

The future of epidemiology may be digital and Big Data analytics. Traditional
epidemiological research using data collection, storage and analysis may be slowly
phased out over the years, as almost all human activity now leaves a digital trail. In
this context, it is important to rearticulate the key ethical concerns in epidemiologi-
cal research. The following section of the chapter will highlight the ethical concerns
in digital epidemiology and Big Data analytics.

Stakeholders in Digital Epidemiology and Big Data Analytics

There are multiple stakeholders in the process of digital epidemiology and Big Data
analytics. It is important to identify these stakeholders in order to discuss the ethical
implications of digital epidemiology for these stakeholders. In epidemiological Big
Data, there are three key stakeholders, namely:
1. Data collectors – these include the public health system who collect data as part
of their program management, monitoring and evaluation, the hospital adminis-
trators who collect data for maintaining patient records and management of the
hospital functioning and non-health players such as social media platforms and
digital commerce platforms like e-commerce providers.
2. Data generators – these include the people who generate these data through uti-
lization of health services, utilization of treatment facilities, e-commerce, social
media posts and interactions and even the mere process of using search engines
for looking at diseases and disease treatment.
3. Data users – these include the health system, epidemiologists, health-care pro-
viders, researchers and policy-makers who use these data for making epidemio-
logical inferences and generate evidence for policy-making.
There are important ethical implications for each of these stakeholders. Firstly, the
data collectors, specifically the non-health collectors of data such as social media
platforms and commercial websites, have access to sensitive information related to
people’s health and behaviours. This has misuse potential such as commercial sale
of database for marketing purposes and release of sensitive private information of a
person without their knowledge. Further, such access to sensitive data gives an
unbalanced power of information to these data collectors. Secondly, the data gen-
erators are often completely unaware of the potential use of the digital data that they
generate and often are rendered vulnerable by the digital transparency of their pri-
vate information. Thirdly, there is often inequity in which type of data user gains
access to digital data, with the corporate users having easier access to Big Data
compared to the government public health users. Ethical analysis of digital epidemi-
ology and Big Data analytics needs to consider all these stakeholders and the ethical
implications for each of them (Signorini et al. 2011). These issues are described in
detail in the following paragraphs.
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 131

I mportant ethical considerations in Digital Epidemiology

and Big Data Analytics

Some of the important ethical considerations in use of digital epidemiology and Big
Data analytics are concerns regarding privacy of sensitive information that is gener-
ated by people, especially in the non-health digital space, which is being used for
epidemiological studies, doubtful veracity of the Big Data due to huge volume of
“noise” in the data leading to harm, use of people’s data for epidemiological research
often without individual consent and concerns regarding equity in access to Big
Data and its benefits.

Concerns of Privacy

Sensitive private information may be accessible to the epidemiologist for Big Data
analysis without any restrictions. Data on sexual orientation, which may be observed
from social media and other non-health-related digital domains, can seriously vio-
late an individual’s privacy, sometimes incriminating them to prosecution, espe-
cially in India where homosexual orientation is criminalized. This is particularly
problematic because the data generator often does not know the potential for the use
of their data for health-related analysis. The IP address of the individual can be
exactly traced back to them, and it may expose them to risks of loss of privacy. Even
if the digital data is anonymized for purposes of epidemiological research, it may be
difficult to strip the data of geospatial identification or group identity. This may lead
to loss of “common privacy” or “group privacy”, which is the privacy of a group of
people sharing a common set of values, behaviours and practices (Unique
Identification Authority of India 2016; Vayena et al. 2015). For example, digital pat-
terns of purchase of medical products online may disclose the privacy of individuals
or of groups of individuals. It may lead to stigmatization of individuals or groups
based on the diseases for which they purchase the drugs.

Doubtful Veracity of Data

Big Data, as we saw before, comes from a wide variety of sources. Many of these
sources are not scientifically robust sources of information. For example, multiple
visits to a particular health-related website may be completely unrelated to the
health condition that is covered in the website and may be just unintended visits.
This huge volume of “noise” in Big Data renders the data unreliable and sometimes
erroneous. It is important to have strong analysis protocols which are robust enough
to identify noise. Big Data analysis has sometimes led to wrong identification of
132 V. Gopichandran and V. Elango

outbreaks. For example, the Google Flu Trends (GFT), a web service that claimed
to predict influenza activity in about 25 countries worldwide, used the health track-
ing behaviours of the search engine users and queries related to influenza to predict
the activity of the illness. In the period between 2011 and 2013, this web service
consistently overestimated flu activity in the United States. Following the identifica-
tion of this problem of accuracy, the GFT is no longer publishing current influenza
estimates. This is a potential harm in use of digital epidemiology and Big Data
analysis. Unless the Big Data analysis capacity is substantially increased, use of
digital epidemiology can lead to harms because of doubtful data veracity (Unique
Identification Authority of India 2016; Vayena et al. 2015).

Informed Consent

One of the important pillars of research ethics is informed consent. Obtaining a

fully informed consent from the participants in the research for collection, storage,
analysis and dissemination of their data is an essential prerequisite which demon-
strates the respect for autonomy of the individual. Each person who provides their
data for epidemiological research should have the right over their information and
should voluntarily decide to participate and share their data. However, digital epide-
miology often uses data for which the data generators have not provided consent for
research use. This is in violation of the principle of autonomy of the generators of
data, who are mostly unaware of their data being used in epidemiological research.
Though most digital platforms take a bracket consent that is packaged in several
words of small print, data generators pay little attention to the fact that the digital
data trail can be potentially used for research and could be traced back to them.
Such compromise of individual autonomy should be carefully balanced with ethical
protection mechanisms such as anonymizing the data, strictly using the data only
for common good, not using the data for commercial purposes and limiting the
harm that can be caused to the individuals because of use of their data for epidemio-
logical research (Unique Identification Authority of India 2016; Vayena et al. 2015).

 oncerns of Equity in Access to Big Data Analytics

C
and Benefits of Big Data

As described previously Big Data analytics requires specific skills and capacity
which is more in the developed world. However, data generators are there every-
where as mobile phones and Internet access are nearly universal. Moreover, Big
Data analytics is global in nature, thus providing easy access of data from the low-
and middle-income countries to high-income countries. There is often a dispropor-
tion in the Big Data analytic capacity and quantum of digital epidemiological data
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 133

generation. Huge volumes of digital data are generated in the low- and middle-­
income countries, whereas these countries have scant capacity for Big Data analyt-
ics and digital epidemiology. Thus, while the risks of breach of privacy are more
among the huge volume of Big Data generators in the low- and middle-income
countries, the benefits of digital epidemiology are disproportionately high in the
high-income countries. This is a major equity concern which needs to be addressed
by appropriate standard practices of data sharing and capacity building in low- and
middle-income countries. One of the main concerns of topical importance in India
is the linkage of AADHAAR unique citizen identity to health-care provision and its
implications for Big Data and digital epidemiology.

AADHAAR Unique Identity Linkage to Health Care

AADHAAR is a 12-digit random number allotted to citizens who voluntarily choose

to enrol. It is offered by the Unique Identification Authority of India (UIDAI). It
collects basic demographic details of each individual along with biometric details
such as ten finger prints, two iris scans and a facial photograph (Viktor and Kenneth
2013). The Government of India is increasingly linking many of its services and
benefits to AADHAAR so that they reach the most appropriate persons. AADHAAR
linkage to the Public Distribution System of foods under the Food Security Act and
AADHAAR linkage of bank accounts and Income Tax Permanent Account Number
(PAN) have been implemented (WHO 2016). The AADHAAR linkage has several
advantages such as accurate targeting of social entitlements and benefits. A major
potential that AADHAAR linkage of public services offers is clarity of identity of
individuals.
The health sector has started using the AADHAAR application for many of its
services. The DigiLocker is a cloud storage area of 1 GB that is offered to all citi-
zens who register for it. The cloud space can be used for storage of important docu-
ments. Health records are also stored in this DigiLocker and this is being linked to
AADHAAR. Under the National Rural Health Mission of 2005, the digital Health
Management Information System has been established in the various states for
tracking health-related data. Under this HMIS unique health identification number
(UHID) is provided to each individual. The UHID is also being linked to
AADHAAR. In many public hospitals like the All India Institutes of Medical
Sciences (AIIMS), New Delhi, the Online Registration System (ORS) has been
initiated for giving appointments for patients. This ORS is also AADHAAR linked.
Health-related Direct Benefit Transfer (DBT) such as the Janani Suraksha Yojana
cash benefit for women who undergo institutional delivery and nutrition supple-
ments to patients on Directly Observed Treatment Short course (DOTS) for tuber-
culosis under the Revised National Tuberculosis Control Program (RNTCP) are all
AADHAAR linked now. The National AIDS Control Organization (NACO) has
also requested all persons living with HIV (PLHIV) to register their AADHAAR
134 V. Gopichandran and V. Elango

numbers with the program in order to better target the antiretroviral treatment. The
Ministry has also announced an AADHAAR-linked Health Smart Card for the
elderly to be piloted in 15 districts of the country in 2017–2018 (WHO 2016).
While all these sources of digital health information will help digital epidemiol-
ogy in a major way, AADHAAR linkage of these data provides a clear and transpar-
ent access to the epidemiologist of clearly identifiable individual health
information.
According to the AADHAAR Act 2016, the UIDAI can collect only minimal
demographic information from the citizens such as name, date of birth and address
and shall not collect information such as caste, tribe, ethnicity, language or medical
details (World Health Organization 2017). However, the National Health Policy
2017 clearly articulates plans to explore linking health and medical data to
AADHAAR (World Medical Association 2008). This raises important ethical con-
cerns of privacy of individuals whose health data is accessible to the public health
system, issues of autonomy and informed consent when such AADHAAR-linked
health data is utilized for epidemiological research and the issue of data
ownership.
Other countries that have such access to identifiable digital medical information
have laws and regulations in place to control access to medical information. The
General Data Protection Regulation of the European Commission provides for pro-
tection of personal data of each individual. However, it does not mention that the
individuals have ownership of the medical data. It puts the onus of protection of
individual rights and privacy on the government in a sense of stewardship. On the
other hand, the United States has the Health Insurance Portability and Accountability
Act (HIPAA), 1996, which provides full ownership of health and medical data to the
individual. It poses strict regulations on who has access to this information.
In keeping with regulatory requirements, the Government of India has come up
with the draft Electronic Health Records (EHR) Standards 2016 (Yadav and
Arokiasamy 2014). The Standards affirm the need for a longitudinal electronic
health record for every individual documenting each health-care encounter digitally
in order to provide better, evidence-based care; enable accurate understanding of
epidemiology of diseases; provide accurate treatments; reduce unnecessary health
expenditure by avoiding unnecessary tests, procedures and treatments; and enable
improved health policy-making. The Standards provide for AADHAAR linkage of
EHR. The Standards state that the EHR generated by the health-care providers are
“held in trust” by the providers on behalf of the patients. The data is owned by the
patients themselves. Patients have full privileges to access their health-related data.
They can restrict access to the data and will have to give explicit consent in order for
their data to be accessed by others. The data shall be available to health-care provid-
ers on “as required on demand” basis. In case of emergency situations and national
priority activities such as epidemics, or notifiable illnesses, the data may be shared
with the authorities as mandated without the patients’ permission. In case the data
has to be shared without individual consent, then it should be ensured that the data
is completely anonymized. The Standards also provide for strict security provisions
7 Data Ethics in Epidemiology: Autonomy, Privacy, Confidentiality and Justice 135

of EHR. Despite these provisions in the Standards, it is important to see how these
ethical, legal and social issues (ELSI) are addressed in the long term, where this
potential Big Data will be utilized for digital epidemiology.
While on the one hand the issue of privacy of individuals vis-a-vis electronic
health records was being debated, the Supreme Court of India in a landmark judge-
ment has pronounced privacy as an inalienable fundamental constitutional right in
August 2017. This has overruled the older judgements which had ruled that privacy
is not a fundamental right. The Supreme Court had charted out a three-tiered, graded
approach to privacy as a fundamental constitutional right to individuals in India
(Zwitter 2014). The first tier is that of intimate privacy of an individual comprising
of marriage, family and sexuality. This tier should be fiercely protected, and any
intrusion by the state should be carefully and strictly evaluated. The second tier of
privacy is for data that is shared for specific purposes in the public domains such as
credit card transactions, social media postings, income tax declarations, etc. It
should be ensured that these data are protected to the extent that they are used only
for the intended purpose and any other use of the data should be thoroughly evalu-
ated from ethical, legal and social perspectives. The last tier is that of public domain
where private data is shared in the public domain for purpose of common good.
Examples of such data sharing include HMIS data. When personal data is in the
public domain, it does not mean privacy is completely surrendered. It only means
that the regulations of protection of privacy of such data are present, but not strin-
gent. Given such heterogeneity of privacy, the Supreme Court had previously
refused to identify it as a standalone homogeneous fundamental right under the
constitution of India. However, the more recent judgement of identifying privacy as
a constitutional right comes as a progressive respite towards a more robust liberal
democracy in India. The other cases in front of the Supreme Court on the legal posi-
tion of AADHAAR and its implications for privacy of individuals are still under
considerations while this chapter is being drafted. The rulings on those cases will
hopefully uphold this landmark judgement that privacy is a fundamental right.

Summary and Conclusions

Public health surveillance, digital epidemiology and Big Data analytics are impor-
tant public health activities. Greater engagement of public health with technology
has opened up a newer and more nuanced set of ethical considerations. This chapter
has discussed key ethical issues in public health surveillance, digital epidemiology
and Big Data. The important commonality in all the three activities is the huge
quantum of data that is collected, stored, analysed, interpreted and used. In public
health activities handling such massive amounts of data, the obvious and primary
ethical concern is protection of privacy and confidentiality of the data. Public health
warrants that a basic level of compromise to individual privacy and confidentiality
may have to be accepted for producing common good to the broader community.
136 V. Gopichandran and V. Elango

However, such a provision cannot be the basis for major violations of an individu-
al’s rights that are not justifiable. This chapter has highlighted that PHS, digital
epidemiology and Big Data all are essential public health activities, and there is an
ethical imperative to perform them. However, while performing such data-intensive
activities, adequate safeguards to individual privacy, confidentiality, autonomy and
rights have to be kept in mind and operationalized to ensure fairness. The Indian
public health system has entered in a big way into electronic health records and
digital health data. In this context, ethical, legal and social implications of the use of
digital health data need to be carefully considered. Balanced ethical oversight of
public health and epidemiological activities needs to be developed as top priority,
and public health institutes in the country have to take a leadership role in develop-
ing ethical oversight mechanism and capacity.

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Chapter 8
Ethical Issues and Challenges in Research
on Gender, Reproductive Technologies
and Market

Sarojini Nadimpally and Deepa Venkatachalam

Abstract This chapter seeks to contextualize Sama’s work on assisted reproductive

technologies and commercial surrogacy from a bioethical framework. It discusses
several ethical issues that are implicated in this burgeoning industry, the foremost
being the stigmatization of childlessness and essentialization of motherhood that
push women particularly to access ARTs (Assisted Reproductive Technologies).
Secondly, even when regulation was initiated, many countries including India adopt
a discriminatory approach to exclude LGBTI people from accessing these technolo-
gies and limit them within heteronormative marriage. Thirdly, the use of donor gam-
etes extracted from others and surrogate mothers bearing a pregnancy and contractually
relinquishing the child upon birth (with or without a commercial transaction) raises
ethical concerns about the commodification and instrumental use of the body and its
parts within the ART industry. Fourthly, there remain ethical questions on trade in
biological materials that are “leftover” or “surplus”, particularly embryos, and what
can be the ethical parameters within which they can be used for further research and
experimentation. An understanding of commercial surrogacy in India would be
incomplete without discussing what the lack of regulation with regard to the practice
of surrogacy has meant for the various actors of this mushrooming industry.

Keywords Reproductive technologies · Infertility · Egg donation · Surrogacy ·

Regulation · Ethics

In January 2014, a young woman, Yuma Sherpa, died during the oocyte retrieval
procedure at a fertility clinic in Delhi. She along with her husband and 3-year-old
daughter had come to Delhi in search of better employment opportunities—a trend
that has become more pronounced during the last two decades with the increasing
globalization of the Indian economy as well as the shrinking of employment oppor-
tunities, forcing people to migrate to big cities. Further, the majority of the migrant
population in cities is employed in the informal sector where they work in highly
precarious conditions without any financial, social or health security. Yuma Sherpa

S. Nadimpally (*) · D. Venkatachalam

Sama Resource Group for Women and Health, Delhi, India

© Springer Nature Singapore Pte Ltd. 2018 139

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_8
140 S. Nadimpally and D. Venkatachalam

was one such person belonging to this vulnerable class of the migrant population in
Delhi. She worked as a shop assistant and learnt from her neighbour that she could
sell her eggs for Rs 25,000 to a fertility clinic. She may have possibly experienced
some concern about the egg retrieval procedure as well as the stigma associated with
the sale of oocytes. But, eventually, Yuma Sherpa decided to sell her oocytes; she
went through the oocyte retrieval procedure in a private clinic during which 24 fol-
licles were extracted from her ovaries. When she was shifted to the recovery room
after the retrieval procedure, she felt uneasy and drowsy and became unconscious.
She died a few hours later. The postmortem report of Yuma Sherpa suggested that she
had suffered from ovarian hyperstimulation syndrome (OHSS), which is generally
caused by the high doses of hormones to stimulate ovaries (Indian Express 2014).
While this case appears to be one of medical negligence where the concerned
doctor at the clinic violated the guidelines of the Indian Council of Medical Research
(ICMR) and the Medical Council of India (MCI), it raises serious ethical issues with
regard to the assisted reproductive technologies (ARTs) including commercial sur-
rogacy industry in India. In August 2010, Sushma Pandey, a 17-year-old who
worked in a scrap depot, died in a Mumbai hospital. This was following severe
abdominal pain over 2 days, suspected adverse effects of OHSS after she had
donated eggs for the third time within a year and a half. Although the Mumbai High
Court had asked for her death to be investigated, no one was held accountable
(Majumdar 2014). It is likely that the unfortunate and avoidable circumstances that
led to Yuma Sherpa’s and Sushma Pandey’s demise are not uncommon.
Media reports in June 2017 highlighted the “illegal confinement” of around
45–48 women acting as surrogates for the duration of their pregnancy in Hyderabad
and in Bhongir (The News Minute 2017). The women who were “rescued” were
from across the country with a few from the north-east of India and one from Nepal.
Reportedly, they were gestating the children as part of commercial surrogacy agree-
ments with commissioning parents, both non-resident Indians and foreign nationals.
Media reports highlighted that the Hyderabad clinic received 15–30 lakh rupees for
surrogacy arrangements of which only about 3 lakh rupees was to be given to the
surrogate mothers. In the absence of a regulatory system, audits and reporting of data
and information by the ART-surrogacy industry on success rates, complications,
morbidities or even deaths, unethical practices are bound to prevail, and their conse-
quences may never be known. This situation highlights the pressing need for regula-
tion of the ART-surrogacy industry to encompass its vast as well as deeply entrenched
networks. More importantly, it merits discussion on the nature and scope of the regu-
latory architecture as well as its limitations in the context of ethics, equity and rights.

Landscape of the ART-Surrogacy Industry

Over the last three decades, with new advancements in reproductive technologies
and forces of globalization acquiring new vigour, the ART industry has witnessed
the rapid global expansion (Pande 2010; Sama 2012). It has not only created a huge
market for persons accessing services for infertility as well as people selling
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 141

reproductive body parts like ova, sperm and uteri, but it has also provided impetus
to new developments in the field of regenerative medicine such as stem cell research
and therapy. That this industry in India is largely located in the private health sector
is no coincidence nor by accident, given that the past three decades in the country
has witnessed a major transformation that fostered the growth of a powerful private
health-care sector. India has emerged as one of the most sought after global destina-
tions for medical tourism, of which reproductive services constitute a substantial
part. Moreover, this highly prolific ART industry built upon the new advancements
in reproductive technologies buoys itself upon the social constructions of mother-
hood as women’s destiny and compulsory parenthood, the desire to have one’s own
biological progeny and genetic essentialism which provides impetus for a “perfect”
child.
In India, the expansion of the ART industry is most clearly visible, with these
ART clinics in the largest of the metropolises to the remotest of the cities. However,
since the ART industry in India is not regulated and the National Registry of ART
Clinics and Banks in India (NRACBI) of the Indian Council of Medical Research
(ICMR) not binding of the clinics, it is difficult to ascertain its size and contours.
Available, albeit dated, estimates indicate that the surrogacy industry is worth $2.3
billion [Confederation of Indian Industries (CII) 2013], and other sources such as
the National Commission for Women (NCW) estimated about 3000 clinics across
India worth more than USD 400 million (Warner 2008; Kohli 2011) offering sur-
rogacy services (Kannan 2009) to couples from North America, Australia, Europe
and other continents. India’s reputation as an extremely favourable destination for
ARTs, especially for commercial surrogacy, is thus inevitable. Several reasons are
responsible for the growth of this vast industry that is almost exclusively situated in
the realm of unregulated private healthcare.
The unique and highly appealing combination of good quality services and tech-
nologies at comparatively cheaper rates is the claim by the industry in India. For
instance, a surrogacy arrangement, including in vitro fertilization (IVF), costs about
$11,000 (approximately Rs 5,00,000) in India, while in the USA, surrogacy alone,
excluding ART charges, costs $15,000 (approximately Rs 6,75,000). A similar
arrangement in the UK costs about £10,000 (approximately Rs 7,00,000). These
indicate comparative lower costs of technological interventions as well as of con-
tracting surrogacy services and arranging for genetic material. In addition to the
clinics that are engaged in providing and promoting ARTs including surrogacy, the
industry in India includes several other players; a wide array of organizations and
personnel catering to clientele, both national and international; health-care consul-
tants; various bodies associated with the hospitality industry; travel agencies; law
firms; surrogacy agents; tourism departments; and surrogacy hostels. The ART
industry that encompasses infertility services, IVF and surrogacy in different mea-
sures includes services to suit almost all pockets, from stand-alone clinics to corpo-
rate chains. The expansive and deep networks of players that comprise the industry
provide diverse affiliated services at local, national and transnational levels. A sig-
nificant number of the players promote their services through websites and design
content to attract clientele, both domestic and international. Promotional strategies
also use traditional religious networks involving religious institutions, especially in
142 S. Nadimpally and D. Venkatachalam

the case of overseas diaspora (Deepa et al. 2013). Advertising ART-surrogacy

“packages” that offer incentives, discounts and “deals” with regard to the services
provided. These generally combine boarding, lodging and other facilities for local
tourism alongside claims of high success rates with ARTs and surrogacy arrange-
ments. Part of such packages is the phenomenon of surrogacy hostels that facilitate
surveillance and control over the surrogates. In such a scenario, given the context of
global inequities and flows, what can/should be the frame of public health ethics and
therefore regulation?

Infertility, Motherhood: Issues and Debates

The promotion of ARTs derives justification from the ideal construct of “mother-
hood as destiny” for women within a marital bond. Emerging from this logic, invol-
untary childlessness becomes a stigma and a social burden, and voluntary
childlessness becomes a social “crime”. For instance, primary studies illustrate that
the failure to perform the mothering role results in unprecedented violence and
harassment of women. Derogatory labels such as banjh, banjhni (infertile/barren)
or sukhi kokh (dry womb) have been used for childless women, irrespective of
whether the problem of infertility is with the men. These metaphors signify the
prejudices and beliefs, which reinforce the responsibility of progeny on women.
On the other hand, reproduction has occupied a significant place in the feminist
discourse as an area of subordination of women in patriarchal societies (Franklin
1995: 323). The technologization of the process of childbirth and the concentration
of knowledge about the technologies largely dominated by men were perceived as
divesting women of control over the process of reproduction. As an extension of this
argument, assisted conception as a process of medicalization of reproduction, which
in turn concentrated control in the hands of the ART provider. The ART-surrogacy
industry undoubtedly reflects existing social arrangements and power relations,
although in much more complex forms, which are dictated by the intersection of the
political economy of infertility, market, labour and technology.
The labour market, for instance, is deeply gendered whether in a developed,
newly industrialized or a developing country (Swaminathan 2009). Thus, women
from hitherto and newly marginalized communities and regions find themselves
more impoverished, powerless and vulnerable in the face of growing globalization
of capital and the shrinking local avenues for jobs and resources. For these women,
over a period of time, while access to traditional jobs and occupations has decreased,
new markets have emerged for both their sexual and reproductive labour. Women’s
motivations to enter the ART-surrogacy industry as commercial surrogates and
oocyte donors are primarily due to poverty and economic insecurity, including
urgent financial needs or burden that they or their families are unable to address or
cope with. Kaushik Sunder Rajan (2011) pertinently points out the existing position
of exploitation, where surplus value of their labour is already extracted as part of
existing or other industries or work options.
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 143

Commercial surrogacy pushes the limits of women’s labour from the private to
the public and from care to work. It brings reproductive labour into the market in an
unprecedented manner and poses a challenge to these ideological constructs of the
family, to the perceived separation of the family from the market and indeed to the
very basis of kinship (Sama 2012). Some feminists, on the other hand, have cri-
tiqued the practice of surrogacy as reinforcing notions of biological kinship ties and
increasing the social pressures of compulsory motherhood and hence stigma against
infertility.
Surrogacy as an exceptional site of exploitation in a global flow of labour and
outsourcing has been denounced by some feminists, while others have expressed
concerns about the overriding concern for profits over health and objected to the use
of the bodies of women of a certain class and region. Cooper and Waldby state that
surrogacy and gamete donation represent new forms of embodied labour that have
proliferated at the lower ends of this post-Fordist biomedical economy. They call
this extensive yet unacknowledged labour force that the life science industries rely
on and whose service consists in visceral experiences like tissue extraction, gesta-
tion and clinical labour. Amrita Pande (2010) argues that the surrogate is socialized
to be a “mother-worker”, in a way that her status as a mother is an insidious disci-
plining mechanism that undermines her status as a worker. Saravanan (2010) argues
that the most important criteria for choosing surrogates are their submissiveness to
the demands of the industry; the surrogates’ location at the edge of poverty ampli-
fies their vulnerability and poses serious threats to their health and rights.
Thus, in such a scenario, women’s reproductive labour is being performed in a
particular configuration that necessitates scrutiny of the norms as well as the ratio-
nale governing this labour once it is commercialized; and at the same time, it expects
an examination of how the prevalent social norms and meanings are alternately
negotiated and deployed. In practice, the conditions under which the surrogates
perform this labour are often a mix of deployment of existing meanings of family
and market and at the same time to ensure a “successful” outcome.

Experiences: Evidences from the Ground

Sama’s1 engagement with ARTs and commercial surrogacy through research and
advocacy spans over a decade and resonates the spectrum of issues that have been
discussed earlier. Sama’s research (2006, 2010) on ARTs flagged the far-reaching

1
For over 10 years, Sama, a Delhi-based resource group for women and health, has been engaging
with ARTs, raising and addressing concerns around gender and health rights that result from their
unchecked proliferation. Sama’s approach to the issues in ARTs has involved responses ranging
from community to policy. Previous research initiatives on this issue contributed to unveiling the
social, medical, ethical and economic implications of ARTs on the lives of women (ARTs and
Women: Assistance in Reproduction or Subjugation?), as well as to deepening the understanding
of commercialization of the ART industry as well as issues of access to these technologies in India
(Constructing Conceptions: The Mapping of ARTs in India). These have enabled the location of
144 S. Nadimpally and D. Venkatachalam

social, medical, psychological and economic implications for women and for soci-
ety as a whole. Sama’s work around ARTs is guided by the perspective that the
interrelationship between reproductive technology and its end user is governed by
gender, as well as by caste, class, religion, ethnicity, sexual orientation and other
axes of power. Through research in the three states of Uttar Pradesh, Odisha and
Tamil Nadu, Sama mapped the industry in India and the perspectives of doctors,
clinicians as well as men and women who accessed ARTs. All of Sama’s work on
ARTs and subsequently on surrogacy examined the trope of motherhood from the
perspective of medicalization and vivisection under ARTs and surrogacy. Sama
endeavoured to link the micro and the macro, through themes such as market, tech-
nology, family, patriarchy, agency, regulation and so on. Sama’s subsequent study
on commercial surrogacy in Delhi and Punjab flagged the contrasts in terms of
Delhi, because of the profusion of ART clinics that conduct surrogacy arrange-
ments, being an accessible and established destination (as the national capital) for
medical services and Punjab, with its diasporic links, and relatively nascent growth
as a surrogacy centre in the region. The narratives of surrogates in the two sites
foregrounded the issues in their entire journey of the surrogacy—with regard to
recruitment, consent, medical regimen/practices, remuneration, contract, relin-
quishment as well as the stigma that they had to negotiate and experience through-
out the pregnancy. The following sections of the paper draw on Sama’s research
with particular focus on ethical and other issues emerging in the context of com-
mercial surrogacy.

Motivations to Be Surrogates

The socio-economic backgrounds of the surrogates from the study had a direct bear-
ing upon their reasons for entry as well as the terms of the surrogacy arrangement.
The 12 women in the study who came from similar economic backgrounds were
invariably situated at the edge of poverty, had low education levels (apart from 2
who were graduates, the remaining had studied not more than class 10 or had not
received any formal education) and were employed in low-paying, informal, casual
work such as piece work in stitching – embroidery, domestic work, as cooks in
catering units or as housewives. Their household monthly income ranged from Rs.
3000 to Rs. 15,000.

discussions and debates on ARTs within the framework of women’s health, rights and social justice
and contributed to consolidation of existing knowledge, understanding and analysis of ARTs, the
fertility industry and tourism. Sama has initiated and has been actively involved in ongoing policy
advocacy efforts towards informing policy and legislation on the issue. Sama’s work has thrown
light on various aspects of this industry and the different actors involved showing different kinds
of interactions and interfaces at multiple levels and the changing institutional forms and structures
that have impacted the lives and conditions under which women have become a part of this
industry.
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 145

Some women came from families that faced immediate needs, and along with
their husbands, they bore the responsibility of paying off debts or buying a house.
The appeal of commercial surrogacy was also in the fact that no other work option
would enable them to earn such a large sum of money in a short span of time and
this was the only way to realize their aspirations regarding securing their children’s
future and affording them education or some financial security by creating
savings.
Several of the women had to convince their husbands to overcome their initial
reluctance, about them becoming surrogates. Some surrogates also considered sur-
rogacy as a better option than domestic work or factory work available to them. In a
couple of cases, the surrogates also stated the persistence of the commissioning
parents and agents was an important factor in them agreeing to take up surrogacy.

To Be a Surrogate: Criteria and Conditionalities

The intent of the women and the agreement of their spouses, however, were not suf-
ficient for entry into surrogacy. The ART-surrogacy industry stipulates several crite-
ria for surrogates that would ultimately contribute to the “successful outcomes” of
the arrangement. These unwritten, albeit deeply entrenched criteria determine the
inclusion or exclusion of women from entering and being part of surrogacy
arrangements.
These include “proven” fertility, so that only women who have borne “healthy”
children previously can qualify as surrogates. This qualification is also extended to
imply that married women alone can become surrogates, reinforcing the socially
acceptable norm of bearing children within heteronormative marital unions. This
conditionality was also foreseen as necessary to avoiding any possibility of conflict
regarding the pregnancy in case of single women.
The preference for married women as surrogates was justified as emerging from
concerns about a successful and safe pregnancy, in the absence of previous pregnan-
cies and child birth. Further, women were tested for various diseases or medical
conditions to ascertain their “fitness” for the pregnancy. When diagnosed with a
health issue, they were either treated or asked to seek treatment and return once
“healthy”. Doctors and agents confirmed that there were other criteria that were laid
down by the intended parents including women from a particular (higher) caste and
a particular religion, which often matched their identities. Other preferences
expressed by intended parents on the lines of the surrogates’ appearances as
“healthy”, “fair”, “beautiful” and “hygienic” were usually accommodated. Most
critically, submissiveness and pliability were seen as necessary qualities in women
to become surrogates. These criteria above all else was central to the selection of the
surrogates.
Similarly, the selection of gametes is mediated by the criteria of class, caste,
ethnicity, education, intelligence, performance, etc. These conformed to and rein-
146 S. Nadimpally and D. Venkatachalam

forced existing social hierarchies and prejudices concerning fertility, marriage as

well as systems of caste and religion (Sama 2012).
The recruitment process involved a multilayered network that functioned via
word of mouth and sometimes through advertisements in local newspapers. Some
surrogates also transitioned into recruiters of other surrogates and were part of these
entrenched networks. Similarly, entering the surrogacy arrangement was usually
preceded by being an egg donor. This helped the women who were considering sur-
rogacy to familiarize themselves with the medical processes and linked them to the
recruitment networks that were active in the communities.

Access to Information and Informed Consent

Information provided to women, largely by agents, during initial interactions was

limited and postured with the sole object of convincing them to enter surrogacy.
Surrogacy was presented to the women as a wonderful opportunity to find much-­
needed relief from their financial stress, with an emphasis on the altruistic motiva-
tion behind surrogacy. Women were told that by agreeing to become surrogates,
they would be giving the intended mother/parents a chance at motherhood/parent-
hood. The agents also emphasized that the conception would be achieved through
technology and that they would not be engaging in sexual relations.
The processes of recruitment of egg donors from the communities are also known
to follow similar patterns, with little or no information being provided about proce-
dures, possible adverse effects, etc., which may facilitate an informed decision by
the women.
Inaccess to information prevails throughout the surrogacy with women being
provided scanty, if at all, any information about the several tests conducted, medica-
tion, procedures, remuneration, relinquishment, etc.
This control over information by agents, clinics and other players was also
implemented proactively; women who were surrogates, even if from the same com-
munities or undergoing procedures in the same clinic, were discouraged from inter-
acting with each other.
The social stigma around commercial egg donation and surrogacy is gleaned by
the industry in constructing and maintaining silences around this work that women
do. This is different in surrogacy hostels where women stay together but are again
in situations completely controlled by the clinic, agencies, etc.
Thus, processes of consent are neither informed and women are particularly dis-
couraged from seeking information and making decisions independently.
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 147

The Medicalized Regimen

The necessity or “medical indication” behind the course the procedures take is ques-
tionable given that they are guided by the primary object of securing the birth of a
healthy child and smooth relinquishment that accommodates the wishes of the com-
missioning parents. This is often placed above the possible consequences and con-
cerns regarding the health of the surrogate or the egg donor. This was also evident
in the case of Yuma Sherpa whose death was reportedly due to OHSS.
The surrogates were generally told that there would be no health risks and the
pregnancy would be just like their previous ones. In the course of the pregnancy and
thereafter, however, the surrogates in the study talk about the discomfort in having
to follow the unanticipated aggressive routine of medication and injections, which
they found to be extremely painful. They also report varied effects such as nausea,
lack of appetite, swelling in the legs, extreme weakness, reduced mobility, weight
gain after delivery and persistent pain from stitches following the caesarean opera-
tions that are generally the norm. Caesarean (c-section) delivery is followed as a
standard practice even when it is not indicated medically; the clinics justify this as
necessary to prevent any risk to the child/children. However, decisions regarding
c-section deliveries are also determined by commissioning parents. For instance, the
time of the delivery was also controlled to accommodate the commissioning par-
ents’ presence, on their request.
Given the low success rate of the technology, multiple embryo transfer is a stan-
dard practice, which in turn necessitates foetal reduction depending on the number
of safe births possible and/or based on the preference of the commissioning
parents.
The surrogates were given medication to prevent them from lactating; breast-
feeding of the child by the surrogates is disallowed. This, according to the clinicians
and agents, is necessary to prevent the building of any bond between the surrogate
mother and the child.
The selection of “healthy” embryos at the time of transfer was also practised,
leading to concerns of sex selection, although the doctors denied such a practice.
Couples accessing ARTs (Sama 2010) have, however, indicated that selection is
possible and practised by hospitals in the process of assisting conception.

Monitoring and Surveillance

Monitoring and surveillance were central to the surrogacy arrangement and clearly
stemming from the assumption that the surrogate mother may attempt to sabotage
the arrangement to their advantage. This assumption and belief form the basis of
sustained surveillance of every aspect of the surrogate’s lives. The possibility of
such surveillance has been, in fact, employed as a promotional tactic to solicit fur-
ther demand for surrogacy in India. The doctors, but most particularly agents, and
148 S. Nadimpally and D. Venkatachalam

surrogacy hostels facilitate the surveillance of surrogates. The ways of monitoring

and ensuring compliance included surprise visits, phone calls, encouraging com-
missioning parents to keep a check, asking surrogates’ husband or children to ensure
she does not exert herself and asking the husband to give up his job and be available
at home to take care of her and also through arrangement, where possible, of their
accommodation in hostels or separate rooms through an agent/agency.
Attempts were made to monitor the lives of the surrogates during the pregnancy.
For those who continued to live in their homes, diets were prescribed, including on
the behest of the commissioning parents, and they were asked to eat only home-­
cooked food. Instructions were also given to keep their physical activity minimum
and to discontinue with work outside and within the home. Surrogates expressed
that such demands were contrary to their needs in daily life and difficult for them to
follow. For surrogates in hostels/homes, stringent rules had to be followed regarding
diet, physical activity, leisure activities, etc.
One of the critical demands made of surrogates was to abstain from having
sexual relations with their husbands for at least the first 3 months and prefera-
bly throughout the pregnancy. For surrogates in hostels, they were allowed visi-
tors but not allowed to go home for the entire period of the pregnancy. These
hostels/homes were justified as necessary and supportive of surrogates by invis-
ibilizing them towards preventing them being stigmatized by families and
communities.

Contract and Remuneration

The contract between surrogates and commissioning parents was drawn up by law-
yers hired by the commissioning parents or doctor; surrogates were not involved in
this process, and no negotiation or discussion took place with them. The contract,
in English in each surrogacy arrangement in the study, was not read by the surro-
gate nor by her husband; nor was it read out to them, and they were told only ver-
bally what it states. Surrogates and their spouses were informed that the contract
states that they agree to give up the child after birth. In one case there was mention
of payment, though the surrogate was unaware of the exact details. The contract
turns into a tool to minimize any conflict or contestation against the commissioning
parents’ rights to the child, leaving out a whole gambit of crucial issues that need
to be negotiated and settled as the terms of the arrangement. It becomes a security
for the commissioning parents, while the surrogates have none, with no control or
say in the matter. Surrogates expressed their inability to afford any legal aid.
Surrogate husbands’ signatures were a mandatory requirement that raised very
serious questions about her reproductive autonomy. A couple of women who were
part of the study had to reconcile with their husbands who they had separated from
due to violence because of the requirement of the husband’s signature and agree-
ment to the surrogacy. The remuneration for the surrogate has unfortunately
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 149

become the peg on which the debate on “commercialization” is taking place.

However, the remuneration paid to surrogates is but a very small percentage of the
total amount of money that is transacted between the commissioning parents and
the clinics and agents. For example, an agent in Sama’s research stated that if about
INR 20,00,000 is paid for the surrogacy package by the commissioning parents,
only about INR 3,50,000 to 4,00,000 is paid to the surrogate. This amount quoted
by the agent was much higher that what the surrogates in the study mentioned
receiving, which ranged from INR 1,00,000 to 4,00,000 average being higher in
Delhi. The amount paid to surrogates is mostly decided by the commissioning par-
ents, clinics and/or the agents. In some instances, payments in the form of gifts
after the birth, additional to the decided amount, or as promises to secure employ-
ment for one of the children of the surrogate (in one case) were also done.
Surrogates’ social locations/attributes also received additional payments from the
commissioning parents. This was shared by an agent with reference to about rupees
1 lakh as additional amount paid to a surrogate from a “high” caste. Preference for
specific social and physical attributes of gamete donors as well as surrogates has
been a major ethical concern.
Payments were made mostly in instalments, with variations in the frequency and
the amount disbursed. In some cases, a similar pattern was observed—INR 10,000
at transfer, INR 25,000 at confirmation of pregnancy and INR 6000–10,000 monthly
expenditure; in some cases, the expenditure on travel for appointments at the clinic
was included in the monthly expenditure, while in some the reimbursement was
additional. Where agents had arranged for accommodation, they bore the expenses
for travel or arranged for conveyance. There was also variation in allowance pro-
vided for hiring domestic help or diet consumption across cases. The common
thread was that the bulk of the payment due to surrogates was made at the end of the
pregnancy following relinquishment of the child/children.
In some of the arrangements, the surrogates were not even aware of the exact
amount promised by the commissioning parents, with the agent/agency negotiating
and paying on their behalf. Surrogates were unaware of the amount of the fee
charged by agents or doctors, but some reported having observed that the doctors
were paid significantly more. The agents reported that they had a fixed commission
rate. In Delhi the agent deducted a commission fee from surrogates as well and had
increased his rate consistently over the years. In Punjab, the agent reported that she
claimed a flexible percentage, depending on the capacity of the commissioning par-
ents to pay.

Relinquishment

There are constant attempts to create a “distance” between the child/children and
the surrogates, to ensure relinquishment. The preference of using IVF technology
and not using the surrogate’s egg is motivated by the concern to ensure that she does
150 S. Nadimpally and D. Venkatachalam

not have any biological link with the child. The fact that the child was not conceived
by their husbands was also reiterated by agents to impress upon the surrogates that
they could not keep the child as it was not “theirs”. Similarly, surrogates were
denied breastfeeding and sometimes were also not permitted to see the child/chil-
dren after the birth. After the delivery, the contact between the surrogates and com-
missioning parents was observed to be diminishing over time; in some cases, after
the birth, there was no contact. The duration of contact is decided solely by the
commissioning parents. Surrogates generally expressed the desire to have some
contact and keep communication with the commissioning parents through the preg-
nancy and after birth, though some were sceptical of the possibility given the com-
missioning parents’ preference of keeping the surrogacy a secret from the child/
children in the future. Two of the surrogates expressed the desire to keep one of the
twins they were carrying; however, their request was refused by the agents and the
commissioning parents.

The Stigma

Stigma surrounding surrogacy diminished surrogates’ power to negotiate, their

invisibility, etc. Surrogates were apprehensive about what the perception of others
regarding this work is and how it will/could affect them. They surmised that they
would encounter responses that would equate surrogacy to sex work or baby-­selling.
As a result of the stigma attached to commercial surrogacy, the women very often
chose not to tell their families, neighbourhood and workplace that they were part of
such an arrangement. Some chose to move out of their own residence or cities to
hide the pregnancy (Delhi), and those who stayed in their own homes negotiated
these spaces by telling their families and neighbours that it was “their” child, report-
ing a stillborn after giving the child away, or that they were giving the child away to
someone in the family (Punjab).
This predicament of stigma and invisibilizing was used by the commissioning
parents, clinics and agents to negotiate terms that were in their favour as well as to
create situations for the monitoring and surveillance of the surrogates. Commissioning
couples, especially women, made attempts to maintain all medical records in their
names, simulate a context of their pregnancy and were observed by some of the sur-
rogates. Stigmatization and ostracism are extremely gendered and common experi-
ences that are linked to infertility, often enforcing couples to maintain silence or
secrecy about their “treatments” even from family members. Simultaneously, the
growing ART industry deploys, and thus re/produces, the hetero-patriarchal institu-
tion of marriage followed by childbirth. Thus, women seek ARTs and expect to be
able to transcend the stigma of childlessness and achieve some status with their
families and communities.
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 151

Regulation

As transnational surrogacy moves across borders making parents and creating ges-
tates—the use of ARTs continues to come under scrutiny. The lack of a comprehen-
sive regulatory mechanism has resulted in the proliferation of the ART and surrogacy
industry. This, combined with the growing legal complexities around surrogacy, has
necessitated comprehensive regulation. The Indian government’s regulatory efforts
towards surrogacy under the broader umbrella of ARTs can be traced to 2005 when
the ICMR, under the Ministry of Health and Family Welfare, formulated guidelines
regarding ART and surrogacy. The ICMR guidelines, however, are non-enforceable,
and hence in situations where there is an instance of negligence as in the case of
Yuma Sherpa, there is a dearth of regulatory mechanisms to fix accountability.
However, the guidelines became the template for subsequent versions of the draft
ART (Regulation) Bills since 2008–2014. Since 2012, the Indian government insti-
tuted restrictions on foreigners commissioning commercial surrogacy in India.
However, the current proposed regulation, the Surrogacy (Regulation) Bill in 2016,
limits itself to the practice of commercial surrogacy, sidelining the regulation of the
vast ART industry.
The Surrogacy Bill 2016 prohibits commercial surrogacy in India, like in many
other countries. It permits only “altruistic” surrogacy by a close relative for child-
less heterosexual Indian couples who have been married for 5 years. This, however,
was the direction that regulation had been moving towards in the past years. Since
2015, the Ministry of Home Affairs (MHA) had stopped issuing visas to foreigners
for commissioning a surrogacy. The Surrogacy Bill 2016 extends prohibitions that
were included in the draft ART Bill of 2014 and permits only altruistic surrogacy
(without payment) and only by “close relatives”. This is permitted only for hetero-
sexual Indian couples (excluding non-resident Indians), who have been married for
a period of 5 years and do not have any children. The draft ART (Regulation) Bills
(2010, 2014) mentioned marriage as a mandatory clause, with the “couple” who
could access surrogacy arrangements, defined as a man and woman living in a mari-
tal relationship for 2 years; this has been extended to 5 years by the current Surrogacy
Bill.
However, apart from the aspect of remuneration, there is no difference between
a commercial or altruistic arrangement in terms of the medical procedures that are
followed. Furthermore, vast ART industry, in which surrogacy arrangements, egg
donation and other procedures for facilitating medically assisted reproduction are
located, has been left largely untouched. At the time of this paper being submitted,
there were no updates available about the draft Surrogacy Bill 2016.
However, the Department-related Parliamentary Standing Committee (PSC) on
Health and Family Welfare examined the Surrogacy (Regulation) Bill 2016 and had
placed its One Hundred and Second Report in the public domain. Some of the rec-
ommendations to the Surrogacy (Regulation) Bill 2016 by the PSC acknowledges
and reiterates the autonomy and rights of the surrogates, which are appreciable.
152 S. Nadimpally and D. Venkatachalam

However, concerns continue to persist in the Committee’s recommendations that are

briefly discussed in the paper. The Committee observes the “inordinate delay” in the
follow-up of the Assisted Reproductive Technologies (ART) Bill, which includes
provisions for regulation of ART/surrogacy facilities. Moreover, the PSC opines
that bringing the “ART Bill before the Surrogacy (Regulation) Bill, 2016 would
have been an ideal attempt for regulation of such clinics (Clause 5.93)” while asking
to be apprised of the reasons behind the decision to draft a separate legislation for
surrogacy.
This is an important issue given that the highly commercial and unregulated
assisted reproductive technology (ART) industry, located overwhelmingly in the
private health-care sector, has been completely let off from any efforts at
regulation.
Since the Surrogacy Bill only permits gestational surrogacy, irrespective of
whether commercial or altruistic, it involves procedures such as in vitro fertilization
(IVF) and embryo transfer (ET), which entail a critical role for the IVF clinics.
While it is important to focus on the phenomenon of surrogacy, at the same time, the
ART industry that drives it must not remain beyond the realm of regulation.
The Committee recognizes surrogacy as “reproductive labour” and raises its con-
cerns with regard to the proposed altruistic surrogacy arrangement. It says that
“expecting a woman, that too, a close relative to be altruistic enough to become a
surrogate and endure all hardships of the surrogacy procedure in the pregnancy
period and post partum period is tantamount to another form of exploitation
(Clause 5.20)”. “Permitting women to provide reproductive labour for free to
another person but preventing them from being paid for their reproductive labour is
grossly unfair and arbitrary” (Clause 5.18). “Pregnancy is not a one minute job but
a labour of nine months with far reaching implications regarding her health, her
time and her family” (Clause 5.19). The PSC also acknowledges the “patriarchal
family structure and power equations within families” and says that given this, not
every member of the family may find it possible to refuse to be a surrogate when
asked by another member of the family and that such a situation may be more
exploitative than commercial surrogacy (Clause 5.21).
The Committee recommends the “compensated surrogacy model” instead of
altruistic surrogacy. Here, “compensation” is a deliberate discursive choice, evident
from its articulation of compensation. “The lost wages for the duration of preg-
nancy, medical screening and psychological counseling of surrogate; child care sup-
port or psychological counseling for surrogate mother’s own child/ children, dietary
supplements and medication, maternity clothing and post delivery care”, according
to the Committee, should be compensated to the surrogate. However, given that sur-
rogate mothers are largely from marginalized backgrounds mostly involved in infor-
mal labour, characterized by poor conditions of employment and payment,
“compensation” is based on the loss of wages which is first and foremost unjust and
unethical. The surrogates should instead receive remuneration that is founded on the
affirmation of the labour that is performed throughout the process of surrogacy and
in keeping with the possible implications for her health as a result. The latter has
been covered through the PSC’s recommendation of insurance for a 6-year period
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 153

following surrogacy regardless of whether or not it has a successful outcome

(Clause 5.60).
However, the Committee’s opinion on the requirement of consent from the hus-
band of the surrogate (Clause 5.120) repudiates the Committee’s firm stand on the
reproductive autonomy of the surrogate. The paternalistic opinion sidelines the very
autonomy it reiterates. The Committee has also not stipulated certain standards for
the medical procedures—whether in the case of the extraction of oocytes or on
informed consent of involved stakeholders or with regard to the transfer of embryos.
The silence on some of these operational issues is concerning as the clinics can
continue to practice unethical processes in this regard without the fear of being held
accountable.

Conclusion

Nuanced, informed debates to foreground issues of the essentializing of mother-

hood, the promotion of compulsory parenthood for all and genetic essentialism,
which are the foundations of the ART-surrogacy industry, are critical. Several ethi-
cal issues emerge vis-à-vis the industry’s cash in on the patriarchal premium of
having one’s “own” biological child to maintain the purity of bloodlines. It thrives
on providing impetus to the eugenic push for a “perfect” child. The appropriation of
feminist language invoking “reproductive autonomy” and “women’s right to
choose” to safeguard their business by ART clinics needs to be challenged.
The falsity of the claims of the industry of a “win-win” situation for commission-
ing couples as well as surrogates has been emerging from evidence of the exploita-
tion and unethical practices prevalent within. The power inequalities between the
surrogates, egg donors, commissioning couples/those seeking ARTs and the clinics,
doctors and agents are a reflection of the reinforcement of prevalent social as well
as the medical hegemonies. Given that the industry and clinics are microcosms of
these power hierarchies, can we and how do we envisage ethical praxis?
The death of Yuma Sherpa (the egg donor who died because of medical negli-
gence) clearly revealed the unethical manner in which the ART/surrogacy clinics
function without appropriate protocols, facilities and emergency medical care. It is
also important to note the role of third party agents, surrogacy agents who play a key
role in this industry but have never been under any kind of regulation.
As a public health issue, infertility has received very little attention; the discus-
sion on infertility is nearly absent in the current debates. Services for infertility care,
including basic screening facilities, are conspicuous by their absence in the public
health system. Health services to address preventive and secondary causes of infer-
tility are negligible driving most couples to access “treatment” for infertility, includ-
ing ARTs in the private health-care sector. Larger questions of access, equity and
affordability emerge here, given that access to ARTs-surrogacy is available primar-
ily in the private health-care sector.
154 S. Nadimpally and D. Venkatachalam

Moreover, although surrogacy is located in the larger ART industry, the attention
to the latter has been in more recent times been diminished. This is also evident
from the current trends in regulation of the industry in India. The ART industry is
vast and deeply entrenched as has been discussed in the previous sections and
urgently requires a comprehensive regulation to address the spectrum of unethical
practices that evidence indicates. Sama has been demanding stringent regulation to
address health risks for egg donors, for surrogates as well as women who access
ARTs. Ethical issues involved in practices like embryo transfer, foetal reduction,
number of surrogacies, age of surrogate mothers, etc. must be addressed through
regulation as well as through enabling access to accurate information. Issues around
fair payment, health care and insurance for surrogate mothers, issues around citi-
zenship of the child if commissioned by non-Indians and the upholding the rights of
surrogates and the rights of children born through surrogates need more deliberation
and clarity.
The experiences of accessing ARTs have shown the significant financial, emo-
tional and physical investment, in the long-term that could continue for years on
end, perhaps without the desired result ever being achieved. This is also closely
related to the collusion of markets and technology, whereby the unregulated and
unethical industry controls access to and presents information selectively towards
its own growth, ignoring the ethics of informed consent of those who seek services
such as couples accessing ARTs or surrogacy as well as surrogates.
The current draft regulation for surrogacy as well as more recent drafts for regu-
lation of ART clinics reflects extremely discriminatory provisions against “single”
persons and queer couples, which are highly problematic, moralistic and inequita-
ble. The limited rhetoric of the heteronormative family, marriage and nation has
been extremely patronizing and violative.
Similarly, the shift to altruistic surrogacy and the assumption that this would be
nonexploitative are both naïve and problematic. The exploitative nature of the “fam-
ily” where women will be subjected to various kinds of pressures including coer-
cion to act as surrogates is not unknown. It raises concerns since it is likely to
obscure the precariousness of the conditions and vulnerability that may cause
women to agree to such arrangements, by relationships of power and the lack of
autonomy to make certain choices regarding reproduction and childbearing.
Moreover, the argument of altruism is often extremely gendered and, in the case of
surrogacy, steadfastly ignores women’s reproductive labour. Discussions around the
practice of surrogacy must engage with the several issues and concerns discussed in
the paper that go beyond the binary of commercial versus altruistic surrogacy.
In the entire discourse on regulation of commercial surrogacy, it is important to
remember that the “commercial” aspect in this phenomenon is not limited to just the
remuneration that the surrogate receives but the highly commercialized availability
of ARTs in the private health-care sector. To regulate surrogacy in isolation from the
larger milieu of ARTs translates into not addressing the vulnerabilities of women
whose bodies are subjected to medically intrusive ARTs.
It is imperative that the women’s, ethics and public health movements strongly
and effectively articulate their position(s) and concerns vis-a-vis ARTs and s­ urrogacy
8 Ethical Issues and Challenges in Research on Gender, Reproductive Technologies… 155

towards an adequate response to the government’s approach to regulation. For those

of us who are asking for regulation of the industry, the basis is on the grounds dis-
cussed earlier, and also based on concerns regarding implementation in the context
of an industry that has a widespread and deeply entrenched network, a ban might
not address the situations that cause women to enter surrogacy arrangements and
may possibly lead to an increased risk of black markets and further violations.
Ultimately, is the presence of an ART-surrogacy industry itself ethical that
exploits the social, gender compulsions of motherhood? In a market-led scenario
with its demand and supply logic, what therefore would be the frame for ethical
practices?

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 Part IV
Capacity Building in Public Health Ethics
Chapter 9
Public Health Ethics in the Medical
College Curriculum: Challenges
and Opportunities

Mario Vaz, Manjulika Vaz, and Arvind Kasturi

Abstract This chapter offers a historical background of medical education in India

and the place of ethics within it. It traces the journey of training of the “medical
graduate” in healthcare: from uniformity of competence to the social role of the
physician and the evolution of aims of the current undergraduate medical education
programme. There are several current challenges in medical education that run
counter to the social role of the physician: commercialization of medical education,
privatization of medical education, the hidden curriculum, basic degree vs. the basic
doctor, basic doctor vs. the specialist, skill based vs. education based, technical vs.
humanistic skills, cure vs. cause, and consequences vs. social determinants. The
case of St. John’s Medical College in Bangalore, with its historical institutional
inspiration, and efforts to reach underserved areas, the evolution of the 2-year com-
pulsory rural placement scheme on graduation, the pioneering effort at the introduc-
tion of medical ethics, and the community health outreach efforts have been
highlighted. The outreach activities serve as a good stimulus for public health ethics
as also public health research at the undergraduate and post-graduate levels.
Challenges and opportunities exist in the conventional medical college setup and
within the present medical curriculum in integrating public health ethics.

Keywords Education · Medical college · Ethics · Public health · Institutional

history · India

M. Vaz (*)
Department of Physiology and Division of Health and Humanities, St. John’s Medical
College and St. John’s Research Institute, Bangalore, India
e-mail: [email protected]
M. Vaz
Division of Health and Humanities, St. John’s Research Institute, Bangalore, India
e-mail: [email protected]
A. Kasturi
Department of Community Health, St. John’s Medical College, Bangalore, India

© Springer Nature Singapore Pte Ltd. 2018 159

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_9
160 M. Vaz et al.

What Is the Aim of Medical Education in India?

The understanding of the role of the graduating medical doctor has crystallized over
the years. At the turn of the twentieth century, The Indian Medical Act of 1916
aimed to ensure uniformity in the award of medical degrees across India. There
were at the time, medical schools and colleges of different course durations, offer-
ing varied curricula. The intent was to move towards improved and uniform stan-
dards and in the process ensure a medical graduate with uniform competencies. The
creation of the Medical Council of India by an Act of the Central Legislature in
1933 was a continuation of this process. In 1946, the Bhore Committee attempted
to define the purpose of medical education in terms of the health problems of the
country and the product of the medical education system. Thus, attention was drawn
to the inequity in healthcare, the disparate health problems of rural and urban popu-
lations, and the need for the development of a “basic doctor”. In making their rec-
ommendations with regard to the graduating medical doctor, the Bhore Committee
(and reiterated in the Mudaliar Committee Report) kept in view the following prin-
ciples that “The doctor of the future should be a social physician protecting the
people and guiding them to healthier and happier life” and that “The training of the
basic doctor should be designed to equip him for such social duties” (Government
of India, 1959–1961, p. 20).
The Bhore Committee stressed the importance of preventive and social medicine
in the medical curriculum – “Our ‘basic’ doctor’s training includes, as an insepara-
ble component, education in the community and preventive aspects of medicine”
(Govt. of India 1946:340). This was a necessary requirement for medical students if
they were to understand the social determinants of health and help the nation address
these problems. This is further emphasized at a later stage in the report – “Preventive
medicine leads easily to social medicine, and it is as exponents of the principles of
social medicine that we would wish the ‘basic’ doctor to go forth into the world of
medicine” (Govt. of India 1946:356). One of the first health reports of independent
India continued to address the need for doctors to be part of the redressal of health
inequalities in India. Thus, the first Prime Minister of India Pandit Jawaharlal Nehru
would exhort the country in 1957: “While our cities and towns require to be looked
after much better than they are at present, it is really the village that cries loudly for
succor. Public health, must therefore, go to the village, and the village should not be
compelled to come to the town in search of it” (Borkar 1957: vi). He was also very
clear about the social determinants of health: “A war on disease and ill health is,
therefore, essentially a war on poverty and all its evil brood”.
The burgeoning of medical colleges in India, particularly from 1980, which by
2016 had witnessed a greater than threefold increase, is driven by a number of fac-
tors. The greatest increase in undergraduate medical college admissions during the
period 1980–2016 came from private medical colleges which witnessed a 14-fold
increase in admissions as opposed to a 66% increase in public medical colleges during
the same period. This suggests a strong commercial aspect where medical education
has evolved into a medical education industry. There are many problems with medical
education in India (Sood and Adkoli 2000). This is reflected in the ­institution of
9 Public Health Ethics in the Medical College Curriculum: Challenges… 161

capitation and exorbitant annual fees, reservation for high paying “NRI” (non-resi-
dent Indian) students, discretionary “management” seats, and a proliferation of pri-
vate medical colleges run by entities unconnected with healthcare and driven by
profit. The NEET (National Eligibility cum Entrance Test) entrance exam has been
one of the attempts to root out corruption in the admission process to medical
colleges.
At the same time, there is a real need to address not only the unflattering physi-
cian to population ratio in India but also the inequitable distribution of the doctors
who graduate either in terms of the geographical locations they choose to work in
(for instance, rural vs. urban), their ultimate specializations or nature of work, or the
patient populations they work with. There are at present 474 medical colleges in
India offering the basic MBBS degree, of which 222 (46.8%) are government and
the rest private, administered by Trusts and Societies.
While a recent document of the Medical Council of India envisions an “Indian
Medical Graduate” equipped with the requisite knowledge, skills, attitudes, values,
and responsiveness so as to function effectively as a basic doctor – “physicians of
first contact” for the community (MCI-Vision 2015) – it is clear that the basic
MBBS degree of the medical graduate appears to have lost its sheen. Issues such as
social status, peer pressure, earning capabilities, and the need to “recover” the costs
of medical education tend to push medical graduates into further specialization.
There is, thus, an overriding desire of medical students to “specialize” – post-­
graduation has become the goal – and, thereafter, the need to “super-specialize”.
Indeed, the MBBS degree appears to serve largely to distinguish between those
trained in allopathic medicine and those who have graduated from other streams of
medicine. In the process, the intent of the medical education system to produce
“basic” doctors, competent at addressing the health needs of a community, has been
lost, and generalists in the form of competent “general practitioners” are becoming
scarce. The result of this trend is that fewer and fewer graduating medical doctors
are able, or indeed, willing to align their training and practices to meet wider public
health needs. This is glaringly evident in a recent review which has highlighted the
disparity in the health workforce in rural versus urban areas (Goel et al. 2016).
Indeed, one of the major reasons why medical students indicate that they might be
willing to work in rural areas is to avail of the extra marks or reservation of seats in
post-graduate courses (Jain et al. 2016). This dissonance between what is intended
and what is achieved in medical education is not new, however, and has been the
subject of extensive introspection even as much as 25 years ago (Mankad 1991).

 hy Is Ethics Important as an Integral Part of the Medical

W
Curriculum?

Through the course of history, a number of medical ethical scandals reached the
attention of the public and resulted in well-defined directives or codes to guide
medical practice and medical research. These include, in more recent times, the
162 M. Vaz et al.

Prussian Directive of 1900, the Reich Health Council Regulations of 1931 which
followed the experiments of Albert Neisser in 1898, and large-scale introduction of
the BCG vaccine in 1930 (Vollmann and Rolf 1996; Bonah 2002; Shuster 1997).
The well-known Nuremberg Code following the horrific medical experiments of
Nazi Germany in World War II and the setting up of various international bodies
such as World Medical Association (1946), the United Nations’ Universal
Declaration of Human Rights (1948), and the International Covenant on Civil and
Political Rights (1966) establish a high place for ethical practice and human rights
in medicine and research. However, the teaching of medical ethics as part of the
formal curriculum in medical school did not occur simultaneously with the develop-
ment of ethical guidelines. Ethical scandals such as the Tuskegee Syphilis Study
and the Guatemala Syphilis Experiments show that ethical behaviour of doctors
could not be taken for granted based on the presence of guidelines or declarations.
In addition, western models of bioethics have been critiqued to focus disproportion-
ately on individual autonomy in healthcare (Clouser and Gert 1990), at the expense
of a population level understanding and a preventive focus (Levy 1998).
While in the eyes of the public and the profession itself, the need for medical
doctors to be ethical in their practice would seem to be self-evident, this has not
always been so, either in medical schools or in the way medical students practised.
Western medical education in India (apart from the Goa Medical School) was devel-
oped in British colonial India (Calcutta, Madras, and Bombay) and was influenced
by the British medical education system. However, just a few decades before the
start of the medical schools in India, medical students in Britain would be character-
ized as being foul-mouthed, indecent, callous, and cynical; they carried “the air of
low men, of low habits…” (Newman 1957:41). At a time when anatomy had a pre-
eminent position in the medical curriculum, The Lancet in 1832 would run an edito-
rial in response to the West Port murders in Edinburgh where Irish immigrants
Brendan “Dynes” Burke and William Hare sold the corpses of their 17 victims to
provide material for dissection for students from Edinburgh Medical College – “It
is disgusting to talk of anatomy as a science, whilst it is cultivated by means of
practices which would disgrace a nation of cannibals”.1
Much of this changed by the turn of the twentieth century. In 1923, Major
General Sir Patrick Hehir, a student of the medical college of Calcutta who in his
own words “spent the greater part of…life in India…in military life…in civil life,
including that of lecturer in various subjects, health officer of a large municipality
for ten years, general practitioner, and consulting physician”, published a book enti-
tled The Medical Profession in India (Hehir 1923, p. 2). In this book, he highlighted
the lacunae of Indian medical colleges in comparison to those in the UK where “the
ideals are loftier, the sense of duty and responsibility more fostered…and almost

1
Editorial in The Lancet, 1832. The Lancet in fact, during the years 1831–1832, would publish
several letters related to the “Anatomy Bill”, for instance, one signed in 1831, by “a Medical
Student”, calls for medical students “to unite in petitioning of the legislature during the ensuing
session of Parliament for any act by which schools of anatomy in this country may be furnished
with subjects for dissection with facility and without pecuniary demands”.
9 Public Health Ethics in the Medical College Curriculum: Challenges… 163

insensibly the principle of service to others, are engrafted” (Hehir 1923, p. 35).
While we cannot ascribe to Sir Patrick Hehir’s views an importance beyond that of
a single, if entrenched, observer of the medical education system in India at the
time, it does highlight the fact that the medical education system in India was grap-
pling with far more practical issues of curriculum and professionalization than with
the idea of medical ethics. The ancient codes on medical ethics prevalent in India in
classical Ayurveda which addressed wide-ranging issues such as behaviour as a
student and a practitioner, the need for continued learning and interaction with
peers, and the doctor-­patient relationship, among others, appear to have found no
place in the evolving medical curriculum in India (Wujastyk 2012). In 1916, the
Indian Medical Degrees Act was promulgated (MCI 1916) and was a forerunner of
the Indian Medical Council Act of 1956 the primary intent of which was to ensure
uniformity in medical education for the award of degrees. Over a period of time, it
appears that the implementation of these acts was achieved through a rather con-
strained prism of critical evaluation of medical education in terms of personnel and
in the “traditional” course content. The primary process of evaluation was through
“inspection”.
In 1950, The World Medical Association (WMA) published a report on the
“Standards of Medical Education” (WMA 1950) in 26 countries of the world includ-
ing India in which the only reference to ethics was whether students took an oath on
graduation, suggesting a global deficit in the formal education in ethics at that time.
In the 1950s, The Medical Council of India and the Indian Medical Association had
formulated codes of medical ethics, but the assumption appears to be that students
would somehow imbibe these values during the course of their medical education,
without any formal inclusion of medical ethics in the curriculum. Out of the 26 coun-
tries surveyed in the WMA report, students in Australia, Belgium, China, Ireland,
India, Italy, Luxembourg, New Zealand, and Sweden, at that time, did not give any
formal promise or undertaking as regards his/her future conduct on graduation or on
receiving their licence to practice. There were limited steps taken to teach the medi-
cal students these codes of ethics during their course (as a part of medical jurispru-
dence), but education in medical ethics, in general, was not envisaged.
Among the many opinions on medical education expressed at the World
Conference on Medical Education held in London in August 1953 (Govt. of India
1955) was an interesting observation by Raymond Whitehead where he criticized
the description of an ideal student by Professor Samson Wright, a noted physiolo-
gist, according to whom an ideal student was “tall, handsome, of great personal
integrity, beautifully mannered, highly intelligent…” Whitehead commented that
that description was not of a medical student but a Greek God. “Let us remember
that students are merely ourselves when young. Let us remember our own deficien-
cies – intellectual and moral…” (Govt. of India 1955, p. 33) he added. There, thus,
appears to be an underlying sense that the training of medical students should extend
beyond technical skills. However, the place of medical ethics in the curriculum
appears not to have been discussed.
In 1955 a Medical Education Conference was convened in New Delhi under the
auspices of Ministry of Health, Government of India. This conference had 111 del-
164 M. Vaz et al.

egates and observers from medical colleges and universities throughout India in
addition to observers from other Southeast Asian countries such as Burma
(Myanmar), Ceylon (Sri Lanka), China, Indonesia, and Thailand, as well as the
Rockefeller Foundation and the World Health Organization. The aim of the confer-
ence was to critically examine the existing systems of premedical and medical edu-
cation. This was a priority following independence in 1947 – “…the problem of
raising the standard of professional training for different types of health workers
and of expanding facilities for such training has been receiving continuous atten-
tion” (Govt. of India 1955, p. 1). This conference was significant on two counts in
the context of this chapter:
1. It extensively discussed the need for enhanced emphasis on preventive and social
medicine in the medical curriculum, in the light of the Bhore Committee Report.
This, in a sense, attempted to place public health in a central position in the
medical curriculum.
2. The conference specifically recognized the importance of including, for the first
time, medical ethics in the undergraduate curriculum, alongside the study of the
history of medicine – “The humanizing influence of a course in the history of
medicine must be great because it brings home to the young medical student the
high ideals and principles of medical ethics which actuated the leaders among
the physicians of ancient India, Greece, Rome and Arabia in the practice of their
profession in the service of the people” (p. 59). The conference suggested that a
provision of 12 lectures in the history of medicine and 12 lectures on medical
ethics must be made. However, no resolutions were passed on these subjects. A
careful perusal of the proceedings of the conference suggests that deliberations
of curriculum and clinical teaching in the “main” medical subjects pushed the
medical ethics agenda to the background. This was a tragedy for medical ethics,
which currently, more than 60 years following that conference, does not have a
formal place in the medical curriculum.
Recent events have highlighted the need for medical ethics to assume a place of
primacy in the medical curriculum. Corruption appears to be an integral part of
healthcare, medical research, and medical education in India (Mahajan 2010;
Chattopadhyay 2013), and this includes its regulatory authorities (Pandya 2009).
Much to the dismay of Indians, this has also received considerable attention in
prominent medical journals abroad (Berger 2014, 2017). Corruption can take the
form of bribes and kickbacks to unscrupulous physicians and healthcare institu-
tions, unethical marketing and sales of medicines, coercion of vulnerable popula-
tions to take part in research, inadequate compensation for participants in research,
bribes for entry into medical colleges, nepotism and influence during promotions in
medical colleges, among others. These and other corrupt practices erode faith and
trust in the health systems and in public/patient-doctor relationship. While the
teaching of medical ethics may not, alone, address these unethical practices, it is an
important part of the many measures that can be taken.
9 Public Health Ethics in the Medical College Curriculum: Challenges… 165

What Is the St. John’s Medical College Experience?

Extending Training to Ensure Socially Conscious Doctors

In 1963, the Catholic Church in India (Catholic Bishops Conference of India; CBCI)
established St. John’s Medical College at Bangalore. A significant focus of St.
John’s was its emphasis on meeting wider health needs, apart from the curative
aspect of medicine. The Catholic Church in India is an important participant in
healthcare. It does this directly through Catholic healthcare institutions (CBCI
2005). The Catholic Health Association of India (CHAI), for instance, has over
3500 member institutions. However, an important role of the Catholic church in
healthcare is also through its participation in social development, education, and
other fields which impact the health of individuals and communities. St John’s
Medical College was perceived as an apex institution which would provide leader-
ship in healthcare and health promotion for this large network.
At the silver Jubilee of the Medical College, the founder Dean, Dr. Louis
Monteiro, would write:
The most important and significant development which is in keeping with the objectives,
has been the active involvement of the College and the Hospital in rural areas….. at the end
of the first decade, the College has extended and consolidated its activities in many villages,
exposing the students (and the staff too) to the life, condition and health needs of the Indian
rural people. (Monteiro 1988)

Ten years after St. John’s started, there was, in fact, an attempt to review the
progress of St. John’s in relation to its stated aims. These deliberations were sum-
marized in a Perspective Report to the CBCI on 11 January 1977 (St. John’s Medical
College 1977). One of the issues that was discussed at this stage was the social
objectives of the college and the need to ensure services to the disadvantaged and
rural areas. This first formal review of St. John’s and its mission recognized many
of the very real problems that could account for the failure of doctors opting to work
in rural areas. It was this report which also highlighted the development of a scheme
that would target rural service as part of an institutional commitment. From then on
students admitted into St. John’s were required to execute a bond to serve for a mini-
mum of 2 years in a rural area following graduation. Since that time, large numbers
of students both lay and particularly doctor sisters (religious nuns) have chosen to
serve in rural areas of need, some for a fixed duration of 2 years following gradua-
tion and others for longer, including for a lifetime. As part of the preparation for
rural service on graduation, several initiatives were undertaken to expose medical
students to service in a community setting.
First, inspired by the Gujarat Milk Cooperative Movement, ACHARA, i.e., the
Agency for Community Health Action in Rural Areas, was initiated at Mallur, about
35 km from St. John’s Medical College, and was a tie-up with the existing milk
cooperative in the locality. While there was an initial involvement of the Bangalore
Dairy, the project continued even after Bangalore Dairy withdrew from the scheme
and emerged as an example of a successful self-sustaining programme run by the
166 M. Vaz et al.

people themselves (Joseph 1998). This health cooperative aimed at the development
of a comprehensive scheme targeting the total development of villages with specific
socio-economic and social health components. It was hoped that someday this
scheme could be extended throughout the country and would involve individuals
from many disciplines.
Second, in 1974, a Unit of the Ross Institute of Tropical Hygiene was established
at St. John’s Medical College with a full-time lecturer. The aims of the Ross Institute
were focused around the issue of occupational health, the specific objectives being:
1. To study the occupational health problems of workers in industry, plantations,
and also non-industrial occupations
2. To create an awareness and interest in the medical profession in the principles
and practice of occupational health
3. To develop the field of occupational health through teaching and research and to
organize seminars and symposia on important problems encountered in various
industries
As a concept, certainly in medical schools, this unit of the Ross Institute was
ahead of its times. Apart from its teaching and service roles, the Ross Institute
played an important role in the outreach activities of St. John’s Medical College
through its work with tea plantation workers in South India and through studies of
the health problems of home-based cottage industries in rural Karnataka including
sericulture, weaving, etc. (Narayan 1979).
Third, the Bangladesh refugee crisis of 1971 saw the participation of over 25
students and interns in the first of many national disaster responses of the college.
Later disaster response teams would address varying disasters in different parts of
India and in neighbouring areas, including the super cyclone of Orissa in the 1990s,
the tsunami in the Andaman and Nicobar Islands, flash floods in Uttaranchal, and
the earthquake in Nepal, among many others. Disaster response teams functioned
on a principle of volunteerism and emphasized the need of students and faculty to
reach out to those in need.
In addition to the above, specific measures were undertaken in the medical cur-
riculum to sensitize medical students to work among disadvantaged communities:
1. In 1981 a 2-week “Rural Orientation Programme (ROP)” was initiated for medi-
cal students soon after they completed the preclinical course of anatomy, physi-
ology, and biochemistry. Students were required to spend 2 weeks in a rural area
and interact with the local populace on a variety of issues including diets, occu-
pations, cultural practices, and health practices, among others. At that time, the
preclinical subjects were seen to be reductionist and dehumanizing – in part due
to the anatomy dissections on human cadavers, the animal experiments in physi-
ology and work with “samples” in biochemistry. The ROP served as a “rehuman-
izing” influence, placing the human person at the centre of medical training and
sensitizing students about the social determinants of health, health inequities,
and limitations in healthcare resources, among others. This exposure was at vari-
ance with the rigid biomedical model which tends to continue to dominate medi-
cal education.
9 Public Health Ethics in the Medical College Curriculum: Challenges… 167

2. In 1990, a second programme, called the “Community Health Action Program”

(CHAP), was created for students in their third clinical year, with an urban and a
rural component. In the URBAN component, students are taken on guided visits
to institutions in the governmental and non-governmental sector, to observe and
understand the role played by non-medical-/non-hospital-based players in the
panorama of health and illness. Institutions visited deal with the terminally ill,
the care of the elderly, the rehabilitation of street children, and the disabled, to
name a few. In the RURAL component, the students visit villages and perform
an analysis of the situation in relation to health, using qualitative and quantitative
methods. They assess health of schoolchildren in the village and end by impart-
ing an educational capsule to the community based on their study.
3. Initially, the rural training programmes of St. John’s Medical College were based
out of government primary health centres, through temporary residential arrange-
ments established for the purpose. Over the years, a need was felt for a rural
centre owned and administered by the institution. In 1992–1993, a “rural com-
munity health training centre” was constructed in Mugalur village, located about
30 kilometres from St. John’s Medical College. Currently, all residential training
programmes are based out of the Mugalur Community Health Training Centre.
This centre serves as a primary care hospital, a base for several outreach service
activities of the institution in addition to being a rural residential training centre
for medical and allied health students. Medical students stay at this centre as part
of their ROP and rural CHAP and return after their period of formal training to
serve as interns at the centre. The experiential learning that takes place at the
centre in itself helps in achieving the objectives of the programmes. In a reflec-
tive writing programme, students shared the impact the ROP has on them, calling
it a “life-changing experience”, that “robbed them of quite a few misconcep-
tions” and opened their minds to a different perspective on rural service (Vaz and
Timms 2016).
4. While the accent was on rural orientation and service in the 1990s and early
2000s, it became clear that urban populations were also experiencing great tran-
sitions in terms of health and illness. The proportion of the urban population in
India has almost doubled in the past 50 years and comprises about 33% of the
population currently.2 With migration playing a role in the urban population
mosaic, and cities being increasingly perceived as places of opportunity, the
challenges faced in delivering health and welfare services to this huge heteroge-
neous population are immense. In order that medical students have an exposure
to this population, an “urban orientation programme” was initiated in 2009
where students in their second year would visit and interact with families in
urban underprivileged areas on topics related to health, nutrition, and other
important issues. The objective of this programme was to sensitize students to
the social determinants of urban health at first hand, so that they would see ill
health not only as a germ, or agent-related issue, but as a sum total of several

2
World bank data: The United Nations Population Divisions World Urbanization Prospects, https://
data.worldbank.org/indicator/SP.URB.TOTL.IN.ZS?locations=IN accessed 14.11.17.
168 M. Vaz et al.

factors which play a role in the balance between health and disease. In the words
of a student in a reflective exercise post one such programme, “What good is our
service to people, if we cannot stop the root cause, if there is a leak in a tap,
would you only mop the floor or would you actually fix the leak? It is our social
responsibility to educate, empower the defeated and strengthen the weak. If we
tackle problems at the grass root level itself through small acts, it will ensure
‘greater good’”.
5. The medical curriculum is comprised of a four-and-a-half-year period of struc-
tured learning, followed by a 1-year period of “compulsory rotating internship”
where the student is posted in the departments in the hospital to serve as part of
the caregiving team and learn to apply all that he/she learned in the first part. This
1-year period includes a 2-month posting in community medicine, where the
student is posted to a rural primary care centre to actually participate in the deliv-
ery of healthcare at a rural primary level. Typically, students learn about the need
for effective communication, the need to adapt to a given situation, the need to
use low-tech solutions at times, and the multiple factors that are associated with
illness in rural populations.

Lessons Learned from These Initiatives

St. John’s Medical College is not the only medical college in India to promote rural
service after graduation. The Mahatma Gandhi Institute of Medical Sciences at
Sevagram, Wardha, Maharashtra, and the Christian Medical College, Vellore, Tamil
Nadu, are among other examples.
Through the initiatives at St. John’s Medical College, several learnings have
emerged:
(a) Most medical students come from non-rural backgrounds and are often exposed
to the realities of rural life for the first time during their ROP. This serves as an
eye opener in many ways, as evidenced by the presentations made by them to
the faculty. It does serve to put the village on the healthcare map, sensitizing the
students to the fact that rural healthcare is an important part of healthcare deliv-
ery in India.
(b) Actual visits to urban slums, studying the conditions therein and discussing
their findings with faculty, help to broaden the students’ horizons and see health
as a part of a larger canvas. Classroom-based discussions on social determinants
of health acquire a real perspective and make the student more holistic in their
approach to illness.
(c) Being a mission-oriented institution, these programmes help to affirm the mis-
sion in real terms. The programmes do not aim to make all students serve their
careers in rural areas but aim to sensitize them to apply the principles of human-
ism in their work, irrespective of the setting.
9 Public Health Ethics in the Medical College Curriculum: Challenges… 169

Experiences with Students

Using the existing Environmental Science classes and the Constitution of India
classes that are prescribed by the Rajiv Gandhi University of Health Sciences,
Karnataka, the Health and Humanities unit of St. John’s brings a critical analysis of
wider social problems into the classroom of first year medical students. Topics such
as water scarcity, food security, consumption of resources, human rights, climate
change, etc. are examined through newspaper articles, presentations by social-­
environmental activists, and film and documentary discussions. In addition, stu-
dents conduct a survey of their immediate environment – the campus – and cover
issues such as waste generation and waste management practices, water wastage
and water conservation, fuel usage, and alternative options. Apart from developing
a heightened sense of observation of factors in their surroundings that impact health,
they are made to recognize their role in the problem, of causing harm, and their
responsibility as citizens first and then as doctors to be responsive to the problem.
Discussions include aspects of dignity of labour, the value of multiple skills and
traditional knowledge, sustainable development, etc. Advocating solutions and
alternative practices as a community of students for the betterment of their wider
community is the ultimate aim of these classes. Movies such as the “Economics of
Happiness” and “Erin Brockovich” bring to the fore the values of being responsive
citizens, of making choices for the wider, common good, for standing up against
injustice, and to mobilize communities towards change. Experiential methods such
as the Theatre of the Oppressed are opportunities to experience the problem from
the shoes of the other and address change from that reality. Sessions are also held on
the importance of being a voter in a democracy, with the actual enabling of getting
students registered on the voter’s list as they turn 18.
A student initiative “Ecologics”, a group that promotes environmental and social
consciousness among their peers, conducts, among other things, cycling trips to the
health centre at Mugalur to not only promote cycling but also to create awareness
among the communities at Mugalur about a current disease, such as dengue. Cycling
trips are also planned to other rural centres around Bangalore where the rural bond
students are placed. Ecologics ensures that the annual inter-college student festival
is held “ecologically” using recycled paper and reducing the use of recyclables to
the extent possible. Recently, a decision was taken by the students, to convert the
annual tree planting programme by the entrant and the passing out batches, into a
tribute to the donors of the cadavers, their first teachers in human anatomy, in the
form of an “eternal grove”. These activities instil in students the values of caring for
the environment, caring for others, the duty of a doctor beyond treating illnesses,
and a sense of solidarity towards a common end and would be a stimulus or precur-
sor for engagements on public health ethics.
170 M. Vaz et al.

Biomedical Ethics as a Central Focus of Medical Training

One of the primary objectives of St. John’s Medical College at its inception was to
“instil the principles of moral values into the students” so that they could maintain
high professional standards and integrity of life. In order to meet this goal, medical
ethics was introduced as a separate subject making it the first medical college in
India to have ethics in the undergraduate curriculum (Ravindran et al. 1997).
Initially, ethics classes were unstructured and informal, but later on the classes were
taken by people who had received special training in medical ethics, and the teach-
ing became more structured. The current ethics programme starts in the first year
and continues into the 1-year internship programme. Students appreciate the formal
instruction given to them as structured ethics classes, especially in the early years,
which serve as a foundation in guiding their outlook:
In St. John’s there are values that are taught to you, how to treat the person as a whole for
example, we can see the difference when we meet students from other colleges. (Study on
the Hidden Curriculum, manuscript in preparation)

However, students in later years of the course question the applicability of spe-
cific ethics instructions in relation to the complex ground reality of patients and
practical issues:
Ethics classes are very idealistic for a real world…for example giving the patient the choice
to do the HIV test, providing counselling, when the person comes to Emergency … we can-
not put the entire hospital staff at risk. (Study on the Hidden Curriculum, manuscript in
preparation)

 hallenges and Opportunities to Include Public Health Ethics

C
in the Medical Curriculum: Way Forward

There is little doubt that the current focus in medical education is very “biomedi-
cal”; medical graduates are trained in large hospitals, largely in urban areas with
advanced laboratory and diagnostic services, technology, and facilities that are a far
cry from those available for the vast majority of the population. Preventive and
social medicine/community medicine/community health within the medical curric-
ulum was intended to ensure that the medical graduate would acquire “broad public
health competencies needed to solve health problems of the community with
emphasis on health promotion, disease prevention, cost-effective interventions and
follow up” (WHO-SEA 2010).
Current biomedical ethics teaching tends to be “principlist” in approach and con-
fined to the ethical dynamics of the doctor-patient relationship. There is also a ten-
dency to view medical ethics in terms of what is topical, even if limited in scope, as
opposed to a more general and widespread ethical malaise. Thus, issues of end-of-­
life care, surrogacy, and freezing of ova and sperm are likely to evince greater inter-
est among students compared to deaths due to malnutrition, avoidable maternal
9 Public Health Ethics in the Medical College Curriculum: Challenges… 171

mortality, limited health access, and catastrophic health expenditure as a cause of

poverty. Public health ethics requires a broader framework than that provided by a
principlist approach and an understanding of larger community dynamics, as well as
the roles played by multiple stakeholders including the state and civil society. In this
context, it is worth remembering that traditional ethical frameworks in Asia have
often been “communitarian” rather than “principlist”.
One of the biggest challenges in incorporating public health ethics in the medical
curriculum is the fact that both public health and medical ethics are generally not
seen as central to undergraduate medical teaching, although considerable lip service
is paid to both. There is also a large lacuna in the teaching of public health ethics
even in institutions specifically devoted to public health education (Pati et al. 2014).
Within the medical college, there are limitations to the translation of community
health to public health, for instance, in the areas of health economics, health policy,
and health systems, among others. In the face of this, what might be the approach
and method to teaching public health ethics?
There has been some discussion about the approach to medical ethics teaching in
medical schools. While the teaching of ethics as a separate subject confers on it an
importance that it rightly deserves, there is a risk that medical students will see it as
yet another subject that needs to be studied and largely forgotten, rather than having
continued lessons for life. An alternative approach is to supplement the specific
teaching in ethics, with an integrated approach that seeks to integrate the teaching
of ethics into other subjects and in all situations (for instance, the bedside). Public
health ethics in medical colleges in India might best be taught by incorporating it
into the opportunities within the existing community health curriculum. This can be
done without disrupting the existing teaching-learning programme and within exist-
ing time constraints, so as to appeal to students, and has been demonstrated in other
subjects, like physiology (Savitha et al. 2017a, b).
While public health ethics has its own theoretical frameworks (Have et al. 2010),
a more student-friendly approach might be to highlight and emphasize a few key
themes. Benatar highlights three values that he suggests need to be promoted: con-
cern for the common good, belief in and promotion of all human rights (and duties),
and a sense of solidarity with others (Benatar 2003). Schroder-Back and others have
suggested that a framework for public health ethics teaching and learning could be
based on a set of mid-level ethical principles. In their own words:
Such principles represent normative thinking that might stem from more than one moral
philosophical theory and thus can be connected back to several theories. They are at the
mid-point of a hierarchy that at its top is formed of overarching theories that attempt to
explain and justify particular normative positions (for example, deontology and the pre-­
eminence of duty in moral consideration, or theories that focus on the importance of conse-
quences in ethical deliberation); and at its bottom comprises a range of particular rules
(expressed, say, through devices such as codes of conduct).

The seven principles include non-maleficence, beneficence, health maximiza-

tion, efficiency, respect for autonomy, justice, and proportionality (Schröder-Bäck
et al. 2014). The basic tenets of public health ethics have also been codified (Thomas
et al. 2002), and these provide a succinct synthesis of various ethical issues that
172 M. Vaz et al.

public health professions need to address. The World Health Organization has also
developed ethical guidelines, specifically for public health surveillance, and it is
important to note that these guidelines have been written in such a manner so as to
be easily understood and implemented by the large community of health profession-
als (WHO 2017).
The current curriculum in community health through its lectures, case studies,
and community and field visits lends itself to a significant opportunity for the learn-
ing and application of public health ethics by medical students. Many ethical issues
that have been highlighted in this chapter are already issues that medical students
are sensitized to, without specifically being located under the umbrella of “ethics”.
However, this learning needs to extend beyond knowledge and sensitization of
issues to an ingrained way of thinking and acting where medical graduates are able
to understand the ethical ramifications of interventions for the improvement of
health in communities, and act on these. Medical education tends to foster a pater-
nalistic approach to healthcare, and this is magnified in conditions of want and with
health illiteracy. Ensuring public participation (procedural justice) in the develop-
ment, implementation, and evaluation of public health programmes/interventions is
not necessarily something that comes naturally to medical students and graduates
who are daily witnesses of the power differential between the doctor and patient.
Acceptance and respect for diverse values, beliefs, and cultures in a community and
for the needs of disenfranchised community members are important issues that
medical students need to learn, as also the need to ensure trust and transparency
despite the higher status accorded to doctors in society. The paternalistic approach
to healthcare is also compounded by the stringent hierarchy within the medical
profession, with medical students at the bottom of the pecking order (Crowe et al.
2017). A more participatory approach to healthcare requires medical graduates to
come out of an entrenched system that they have been a part of.
In order to achieve a start in the teaching of public health ethics in medical col-
leges, at least two things need to be done. First, faculty in community health depart-
ments need to be sensitized and trained about public health ethics, its dimensions,
and importance. Prospectively, post-graduates of community health should undergo
training in public health ethics, and this should be a part of their formal assessment.
Second, a careful review of the Community Health Curriculum needs to be done in
order to identify contemporary issues of need and where public health ethical prin-
ciples can best be introduced, discussed, and debated.

Acknowledgements The authors wish to acknowledge Tom Mishael, a medical student at St.
John’s Medical College, who researched the evolution of medical ethics in India as part of a
Waltraud Ernst Studentship in the Department of History of Medicine, and Dr. Savitha D. and Dr.
Olinda Timms for the permission to use student quotes from a study on the hidden curriculum in
medical education.
9 Public Health Ethics in the Medical College Curriculum: Challenges… 173

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Chapter 10
“Now We Feel Ethics Is Everywhere”:
Reflections on Teaching a Course on Ethics
in Public Health Practice

Arima Mishra

Abstract The need for an explicit nurturing of ethical lens to public health practice
has been increasingly stated, yet such training is rare and/or inadequate. Very few
public health education programs in India have an explicit module on public health
ethics, and even where imparted, it is skewed towards biomedical and/or research
ethics. This chapter takes the readers through a journey on designing and transacting
a course on Ethics in Public Health Practice as part of a Master’s Program in
Development in Azim Premji University. It shows how clarity in learning objectives
with pedagogical processes including case studies, simulations, film discussions
and group work can go a long way in building capacity of public health profession-
als to develop skills in discerning ethical dilemmas and conceive of possibilities
of resolutions through continuous deliberations and reflections. This course demys-
tifies ethics as the prerogative of “ethicists” by bringing home the point that ethics
is integral to public health practice and hence public health training must embed
ethics explicitly and intentionally in its programs. It hence expands the discussion
of public health ethics to include the wider canvas of public health practice including
agenda setting, policy-making, program design, implementation and evaluation and
research settings.

Keywords Public health ethics · Teaching · Empathy · Azim Premji University ·

Ethical deliberations

Introduction

In a response to a question on what kinds of ethical issues in health they have come
across in their field work settings, one of my post-graduate students remarked,
“Ethics is so integral to health. Everything about health has an ethical dimension so
it is difficult to single out any specific issue”. All public health professionals,

A. Mishra (*)
School of Development, Azim Premji University, Bangalore, India
e-mail: [email protected]

© Springer Nature Singapore Pte Ltd. 2018 175

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_10
176 A. Mishra

irrespective of their training, roles and work settings, would resonate with this
remark. However despite this recognition, understanding and application of ethical
reasoning seem more assumed than consciously nurtured. The everyday ethical
issues and dilemmas faced by public health professionals are increasingly coming
to the fore (Baum et al. 2009; Khanna 2012, 2015; Posel and Ross 2014; Harper
2007; Banks et al. 2013; Bhan 2010). Such dilemmas cover a wide gamut of issues.
For example, these include the following: How to promote health practices without
infringing on individual freedom (e.g. promoting vaccination, institutional deliv-
ery)? Does administering directly observed therapy in tuberculosis program violate
principles of confidentiality? How to communicate health messages that conflict
with prevalent norms within a community (a particular religious group being averse
to the benefits of vaccination)? How to reconcile potential conflict between legal
norms and values of clinical practice (provision of MTP (Medical Terminantion
of Pregancy) services by health providers not legally certified in response to com-
munity demands)? How to resolve the conflicting demands of the health system and
that of the community, etc.? These dilemmas, whether in research sites, agenda
setting and policy-making, design, implementation and evaluation of programs,
health communication and advocacy in public health, are far from categorical or cut
and dried issues. Hence a blanket application of medical/clinical ethics nor ethical
codes developed in research settings are directly amenable to ethical analysis in
public health (Holland 2010; Kass 2004). As discussed in Chap. 1 in this volume,
ethical dilemmas in public health are far more complex and chaotic due to the
very nature of public health enterprise itself that draws on different disciplines,
research epistemologies and traditions (epidemiology, anthropology, participatory
action research, etc.) and includes a wide array of functions (policy-making, moni-
toring and evaluation, surveillance, research, health communication), involvement
of many actors (governments, community, non-governmental organizations, CSR
and recently global health initiatives) and different kinds of interventions (ranging
from vaccination to tax on high-fat food items to community-based monitoring). Its
focus on population level health necessarily mandates public health practice to navi-
gate through social inequalities, structures and norms of society to address the
causes and consequences of ill health. Hence a societal understanding of public
health and a critical and reflective practice through nuanced application of ethical
reasoning is key to achieve the goals of public health. Yet public health profession-
als receive little training in building competency in applying ethical reasoning in
their practice (Peckham and Hann 2010; Zodpey 2015; Schroder Back et al. 2014).
The need for adequate training in public health ethics has been explicitly stated,
albeit only recently. There have been several initiatives including the establishment
of Global Health Workforce Alliance and the Asia Pacific Alliance on Human
Resources of Health (AAAH) in 2005, the report of the Joint Learning Initiative on
Human Resources for Health (HRH) in 2004, The Committee at the National
Institute of Medicine on “Who will keep the public healthy?” (2003) and the Lancet
Commission on Education of Health Professionals for the twenty-first century
(2010) to deliberate on public health education. These initiatives strongly call for
revamping public health education that could respond to the current and future chal-
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 177

lenges of public health. Hurton (2010:1876) sums up the Lancet Commission’s

thrust as “….nothing less than a remoralisation of health professionals” education.
Such a mammoth task requires, as the commission notes, innovations in institutions
and instructions in teaching and learning. The commission recommends transfor-
mative learning that could help build competency in critical and analytical skills and
more informed application of such skills in relevant contexts (Frenk et al. 2010). At
the core of such educational efforts is to nurture health professionals to be socially
responsible and accountable to the people they serve. The need for a more relevant
and integrated curriculum that speaks to the needs of populations and health sys-
tems is strongly felt (Zodpey 2015; Hurton 2010). Specific efforts have been under-
way in thinking through innovative models of public health education and within
that how to teach ethics in public health education. The Associations of Schools of
Public Health with the Health Resource and Service Administration came up with
an extensive model curriculum for teaching public health ethics along with other
efforts (Jennings et al. 2003; Thomas 2003; Schroder-Back et al. 2014). Explicit
discussions ensued on how best to teach public health ethics to promote practical
application, should the teaching be intentional/explicit or embedded in overall pro-
grams, stand-alone course or through topics in different courses and a core or an
elective, and most importantly what needs to be taught and how (Thomas 2003;
Schroder-Back et al. 2014). It has however strongly been argued that teaching of
ethics needs to be intentional and explicit as “it holds promise of training students
to recognize hidden ethical assumptions, to consider them critically and to design
and implement research and interventions that more fully achieve an ethical per-
spective” (Thomas 2003: 179). Such competencies need to aim at continuous reflec-
tions, deliberations and resolutions as ethical practice is not about a one off ethical
clearance like in research proposals nor a mechanical application of frameworks
and principles (Harper 2007; Holland 2010).
India has woken up only recently to the need for rigorous public health education
that responds to the changing times and demands. The last decade in India witnesses
increasing attention given to the domain of public health within the larger develop-
ment goals. This is reflected in a spate of state-led programs and missions including
the National Rural Health Mission, National Health Mission, National Nutrition
Mission, National AYUSH (Ayurveda, Yoga, Naturopathy, Unani, Siddha and
Homeopathy) Mission as well as several other initiatives spearheaded by NGOs/
grass-root organizations and more recently the CSR (corporate social responsibil-
ity) activities. This is apart from the fact that India has been home to many large-­
scale public health programs whose implementation continues to be fraught with
several challenges. While managing and implementing these programs and mis-
sions are an imperative, the evidence on persistent malnutrition, inequities in health
outcomes, high out-of-pocket expenses, rapidly growing non-communicable dis-
eases and introduction of new technologies reinstate the critical role of public health
ethics as one grapples with the health challenges of the twenty-first-century India.
In this context, concerns regarding quality and effective training of professionals
involved in this sector loom large (Zodpey 2015; Pati et al. 2014).
178 A. Mishra

Public health education institutions have begun to mushroom in India with very
different thrusts, curriculum and pedagogy. In a review of public health educational
programs in the country, Pati et al. (2014) argue that ethics courses are yet to find
their rightful place in public health education. Only eight programs have a dedicated
course/module on teaching of ethics. Most of the programs offering ethics target a
very limited audience with life science and health science background leaving out a
large chunk of professionals working in the field of health drawing from other dis-
ciplines. Most of the ethics courses are offered as short courses/seminars/ work-
shops or series of guest lectures and mostly focus on research ethics, bioethics and
ethics and human rights. They also note that many of these programs have a skewed
coverage of themes apart from the fact that ethics is taught in a didactic mode.
Experiences of teaching in other contexts show that ethics cannot be taught through
a select list of topics rather must be located within the larger perspectives of public
health (Kessel 2003). The need for programs that teach ethics explicitly aiming at
developing competencies in critical and ethical reasoning, team work and contex-
tual applications of ethical principles through innovations in curriculum and peda-
gogy is repeatedly stated (Frenk et al. 2010; Thomas 2003; Kessel 2003;
Schorder-Back et al. 2014). Reflecting on the limited coverage of articles in the
journal of Public Health Ethics, Verweij and Dawson (2018:4) reiterate the need for
more systematic research into teaching practices and the effectiveness of method in
strengthening ethical sensitivity and skills. To address this critical training gap and
the imperative of public health ethics, we, at Azim Premji University, have intro-
duced a course on “Ethics in Public Health Practice” as part of a Master’s in
Development program. This chapter reflects on the author’s experiences of develop-
ing and teaching this course seeking to contribute to the discussion on capacity
building in public health ethics, which in India, is at a nascent stage.

Designing the Course

The idea of a course on Ethics in Public Health Practice emerged during a visioning
meeting on mapping public health education in India organized by the University in
2014 where representatives of major public health institutions had participated. One
of the participants raised a provocative question: “What are we training public
health professional for? Is it for the market or to be able to respond to national
needs?” This question provided a forum for deliberation on the multidisciplinary
nature of public health, goals of public health and the perceived threats of increasing
medicalization and technologization of health neglecting the social determinants of
health. Participants reiterated the fact that public health has a social purpose that
puts the “public” and “health” (broader sense of including curative, preventive and
promotive) at the centre and the training programs must aim at reinstating this social
purpose through building critical and ethical thinking with relevant skills. Teaching
public health values and ethics, hence nurturing socially committed reflective public
health practitioners, was discussed thread bare including should ethics and values of
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 179

public health be taught as a separate course or through a set of foundational courses,

should this run throughout the program, how should one ensure that such learning
enable continuous reflections, etc. This meeting was followed by a consultative
workshop, we organized in 2015, with public health professionals who have had
experience of teaching ethics or engaging with ethics in public health research
where the specific question of what works in teaching ethics (curriculum, peda-
gogy) was discussed. We presented a skeleton curriculum structure to the group
inviting comments and feedback. Based on this, we (one of my former colleagues
and I) developed the course which was then peer reviewed independently by two
colleagues outside the university before this was placed for internal review and
approval in the Curriculum and Pedagogy Committee in the University that has the
mandate of reviewing all courses across programs in the University.
We had a specific set of considerations in mind while developing the course con-
tent. These included the following: (i) the course should speak to the program objec-
tives within which it is located, (ii) clear articulation of the learning outcomes and
developing students’ assessments to fulfil these, (iii) the profile of students joining
the program and who are likely to opt for this course, (iv) the content should have a
balance of breadth and depth including developing perspectives with application
skills and cover issues/case studies in the realms of health policy-making, imple-
mentation of programs and public health research broadly constituting the terrain of
“public health practice” (thus not limited to research settings) and (v) inclusion of
pedagogical tools that enhance students’ skills in deliberations and reflections.

 thics in Public Health Practice Within the Master’s

E
in Development Program

Location of a public health ethics course whether within a medical college, school
of public health or a university is important as the course is embedded within the
larger mandates of the institution and objectives of the program. The Azim Premji
University is an endowment-based not-for-profit private university committed to a
social purpose. Set up in 2010 by the Azim Premji Foundation that has been work-
ing in the field of strengthening school education for close to two decades, the uni-
versity visions itself to contribute to a just, humane, equitable and sustainable
society.1 As part of this vision, along with several other activities including research,
field practice and continuing education programs, it has launched masters’ pro-
grams (in Development, Education, Public Policy and Governance, Law and
Development) to prepare students to contribute to the social sector. The Ethics in
Public Health Practice course is offered as part of the 2 years Master’s in Development
program. The aim of the program is to nurture students to become reflective devel-
opment practitioners and leaders of social change. It seeks to “prepare individuals

1
The university was set up under the Karnataka State University Act in 2010. See for more details
about the university www.azimpremjiuniversity.edu.in.
180 A. Mishra

to become aware of the complexity, depth and scope of the discourse of develop-
ment, its ethical imperatives and its implications for policy and action with special
reference to the Indian context” (Azim Premji University 2018). The admission
process is designed carefully to enrol students from diverse backgrounds (profes-
sion, geography, gender, social background and work experience) who share a com-
mon passion to work in the social sector.
Flowing from this program objective, the curriculum is designed to build compe-
tencies in theoretically informed and methodologically grounded development
practice. The curriculum has eight core courses in the first two semesters in year I
followed by a range of electives in different domains within Development in the
subsequent semesters in year II (Public health, Livelihoods, Sustainability, Policy
and Governance, etc.). The core courses lay the foundation of approaching the ideas
and practices of Development from different disciplinary lenses as well as hands on
courses like Skills in Development Practice and Introduction to Research. Ethics in
Public Health Practice is offered as an elective in the last semester (semester IV).
Hence it draws on students’ learning from the foundational courses, select electives
as well as engagement with the field through three rounds of field practice (Field
Immersion, Field Internship and Independent Field Project of 2, 6 and 8 weeks’
duration of being in the “field”, respectively).

Course Content

Locating the course within the program objectives, the curriculum and pedagogical
requirements of the university and drawing on experiences of teaching public health
ethics in other contexts, we developed the syllabus of the course. To begin with, we
specified the learning objectives which provided the frame for what (the content of
the course) and how (pedagogical tools) should the course be taught including how
students be assessed.2 The course envisaged developing three specific competencies
to develop among the students at the end of the course. These competencies include
ability to (a) discern/identify an ethical issue; (b) deliberate individually and in group
settings through bringing out the nuances of the ethical challenge, multiple perspec-
tives, relevant application and adaptation of ethical guidelines; and (c) conceive of
multiple possibilities of resolutions. These competencies rested on students’ under-
standing of public health perspectives, goals, foundations, frameworks and ethical
tenets of public health ethics and their unfolding (nuanced application) in varied
contexts including health policy-making (including priority setting), design, imple-
mentation and evaluation of programs and research settings. The ethics discussions
in these varied settings of policy, program and research allowed students to have a
wider canvass of public health practice (beyond research) as they are likely to be
involved in different roles in these work settings once they graduate.

2
See for details on course goals vs learning objectives https://teach.its.uiowa.edu/sites/teach.its.
uiowa.edu/files/docs/docs/Goals_vs_Objectives_ed.pdf accessed on November 17, 2017.
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 181

Keeping the learning objectives in mind, the course is structured into four units.
The first unit delves deep into locating public health ethics as a distinct field (from
medical and bioethics) unpacking understanding of “public” and “health”. It brings
home the lager message that public health ethics rests on a societal understanding of
public health that upholds values of equity, rights and justice and locates health neces-
sarily in the larger social, political and economic arrangements of a society. Contrasted
with clinical and bioethics, it expands its scope and orientation to include understand-
ing of communities, health systems, global health initiatives and actors and their role
in public health policy and practice. Unit 1 takes students through the different ethical
principles and frameworks (utilitarianism, liberalism, deontology, feminism) while
conveying that application of these principles is not straightforward and needs con-
tinuous deliberation and application. Flowing from these larger perspectives, the rest
three units help students navigate, appreciate and crack ethical issues and challenges
in specific contexts of health policies, programs and research (including advocacy).
The last class wraps it up through students’ reflections on their learning.
The assessments are continuous and progressive. It has four components
(Table 10.1). Students are evaluated on the nature of their class participation
throughout the course (20%), case study analysis in groups (25%) and developing
case study idea by individual students (35%) which has an additional component of
presentation of case studies ideas to the class and the instructor (20%). The two
major components thus are development of a case study idea (it can be an advocacy
campaign, research study, piloting an intervention idea, evaluation of a scheme/
program, communication strategy for a health promotion idea) by individual stu-
dents to assess how students have learnt to embed public health ethics in the work
they do. Detailed guidelines for developing individual case studies are shared with
students (see Box 10.1). Students are expected to present their case study idea to the
class and elicit feedback to help them develop it further. Additional feedback on the
drafts is provided individually to students by the instructor outside the class room.
This also ensures that students are thinking through this idea and developing it itera-
tively. The group case study analysis precedes this. Since one of the key elements of
public health ethics is enabling students to deliberate and resolve in group settings
(required in their work life), the second important component in the assessment is

Table 10.1 Evaluation criteria

Nature of assignment Weightage % Timeline

Group work on case study analysis (identification and 25% 6th week
collaborative resolutions in public health ethics)
Participation in class discussion 20 Continuous
Individual presentation of case ideas to the class eliciting peer 20 10th week
and instructor’s feedback
Incorporation of feedback and development and writing of the 35 15th week
case study
182 A. Mishra

Box 10.1 Guidelines for individual case study ideas

By the end of the course, you are expected to have a solid grasp of how to
embed public health ethics in the work that you do. Hence this assignment
expects you to come up with a project in the nature of a research proposal, an
evaluation of an existing intervention, implementation guide for an existing
program, designing a health scheme, or an advocacy campaign around an
issue or any other project of your choice. This is an individual activity.
Irrespective of the nature of the project, the following pointers will help you
as you design your project and assimilate the learnings from this course. You
should use the lenses of equity, rights, vulnerability, risk and social justice
while embedding public health ethical concerns into your project.
1. Why choose this particular theme for the project? What is the process of
defining the problem at hand (e.g. evidence on burden, impact evaluation,
etc. think of all the information at hand that help you to define the problem,
problem for whom, is this really a priority)? (link to distributive justice/
priority setting/cost-benefit analysis/efficiency)
2. What is the goal of the project?
3. Identify who are the stakeholders in this project (what are their moral
norms/claims/authority and how might these impact the definition of the
problem, process of achieving the goal of this project, what potential con-
flicts does one envisage among different perspectives and how might one
resolve these).
4. Will there be specific groups of stakeholders who will be differently
impacted as a result of your project? For example, will one group be
impacted more or less and why would this be the case? Keep the relational
power in mind (focus on equity lens and keep questions of who will it
benefit and how in mind).
5. How will you ensure that public/community participation is retained in
your projects? Please think carefully at which stage you will include public
(who would be part of this public) participation, why and how (link to
procedural justice, individual/community consent).
6. Do you see any potential conflicts between public health ethics and legal
requirements or organizational conflicts in your projects? Or any other
conflicts you may anticipate in the settings of work (e.g. research setting/a
specific organizational setting, e.g. if your project involves working with
adult married women and you realize that women are married early which
potentially conflict with legal and marital age)? If so clearly state them and
think about how you might address them.
7. Think of how context (broader political, economic as well as specific cul-
tural settings) influences the ethical analysis of issues involved in your
specific project (e.g. vaccination, why MR vaccine was resisted by parents
due to a rumour).
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 183

case study analysis in group settings. Students are provided with one case study
each and a set of guiding questions to analyse this. Each group presents it to the
class and responds to questions/discussions.
The course is transacted over a semester with 16 weeks with a total 48 contact
hours (3 hours in each week) with additional office hours for individual case study
feedback. A total of 21 students in one batch (2015–2017) had opted for this elec-
tive. They were drawn from various backgrounds but had already done three semes-
ters in the program together thus having a shared understanding of development. All
of them have had some engagement (either through field projects or electives) with
the health domain including broad understanding of the health system issues and
challenges in the Indian and global context as well as encounters with ethical chal-
lenges in their field settings.

Pedagogical Processes and Tools

Learning to Empathize and Raise Questions

A course on Ethics in Public Health Practice cannot be learnt and/or taught from a
social distance (as a distant commentator) assuming it to be a technical exercise of
applying universal ethical standards and guidelines. Kleinman (1999:72) rightly
cautions:
The irrelevance of ethics can be seen when considering universal ethical formulations of
justice and equity that do not begin with local moral conditions of poor people, those expe-
riencing the systematic injustice of higher disease rates and fewer health care resources,
because of their positioning in the bottom of the local social structures of power. Dealing
with issues of justice in the absence of such contextual concerns renders ethical formula-
tions mere speculations, utopian pronouncements that are gratuitous and beside the point.

Sensitivity and empathizing with issues, experiences and outcomes of people

in different contexts or what Guillemin and Gillam (2015) call “ethical mindful-
ness” is critical for any meaningful engagement with ethical practice. Empathy
and greater self-awareness are at the heart of developing reflexivity which is
important for understanding human experiences, discerning ethical challenges,
unravelling complexities of such challenges and thinking of ways to address
these. There has been increasing engagement with such ethical mindfulness
through pedagogical tools of reflective writing, narratives, simulations and dis-
cussion of case studies specifically in the fields of medicine and nursing
(Dasgupta and Charon 2004; Porter and Ventakatapuram 2012; Walsh 2011;
Diekelmann 2001).
Following from this turn towards the need for empathy in understanding public
health ethics, the course uses simulation, narratives, case studies and films. The course
begins with a simulation exercise of “Power Walk” which takes the students on an
experiential journey of health inequity where students are able to visualize how soci-
ety is organized and power and resources are distributed unequally across different
social positions (caste, class, age, gender, region, religion, specific health conditions)
184 A. Mishra

and what it feels to be in a position of power (or powerless).3 This exercise elicits a
rich discussion of inequity (what is unnatural, unfair about it), values that uphold a
certain societal order and naturalizes or questions inequity (market justice, social jus-
tice), responsibility for health (individual or collective) and what each one of us irre-
spective of our roles can contribute to this collective enterprise of public health.4
The first week also uses a real story covered in the media on Chhattisgarh steril-
ization tragedy (2014) where 11 women died and many more hospitalized due to
related complications. The discussion elicited students’ reactions, thought pro-
cesses, emotions to questions on why is it called a tragedy, who and what is at stake,
who are the stakeholders and what are their perspectives and students’ views on
these perspectives, etc. While students distinctly see this as a “failure of conscience”
sharing their feelings of anger, sadness and frustration, they also raised several
questions about accountability of officials involved in one of India’s largest and
oldest health and family welfare programs and the role of the state vis-a-vis the poor
tribal women in planning family for their individual benefits as well as nation’s
good, problematic of choice and informed consent, gendered nature of family
planning (with skewed focus on female sterilization), etc. The story served well in
the initial week for a more open-ended discussion because (i) it dealt with an
extreme adverse event where the moral and ethical failures were evident, (ii) students
were well versed in the objectives of this program and (iii) information cited in the
media was limited allowing students to think of other actors who seemed invisible
in the narration of the incident and their perspectives, additional information
(students who have worked on reproductive health issues cited information, experi-
ences from their field work) and questions needed to address this. This rather open-
ended discussion allowed reinstating the need for public health ethics. It helped
the class to open up and learn from each other in responding to an adverse event like
this. The ways they related to this event were reflected in their verbal gestures/emotions
as well as framing several questions. Not all students were equally forthcoming in
sharing their views in the first instance but gradually learnt from one another as
some students shared their usual inhibitions of “is this the right question to ask?, “Is
this an ethical issue?”. Valuing the forum of a class room discussion, one of the
students at the end of the course reflects:
This course has been a personal journey for me where I constantly have fought within
myself trying to understand the confusions that emerged once we started unravelling the
different sides of the issue at hand and multiple perspectives. I felt everybody was right
including myself. But then if everybody is right, how does one move forward? I felt that
only a class room could provide a liberal space where I could express this confusion as I
myself listened to my class mates who had different experiences/perspectives to share. I
learnt what it means to navigate through different viewpoints, to talk about shared
­understanding of a problem and possible resolutions. Ethics is humane and it is important
that one looks within first before trying to address any other issues out there.

3
Power Walk is widely used in training on gender, equity lens in program implementation, etc. in
different settings. The simulation exercise can be widely adapted to suit the contexts and require-
ments of learning objectives. See for more details Pradhan et al. (2010), UNICEF https://www.
unicef.org/tdad/jjpowerwalk.do.
4
This discussion is informed by Beauchamp (1999), Kass (2004) and Holland (2010), among
others.
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 185

 ollective Deliberations Through Discussions of Films, Case

C
Study Analysis and Group Work

Watching and discussing the film on Miss Evers’ Boys (1997) took the students to
the next level of complexity of issues and concerns. While the film addresses the
infamous Tuskegee experiment in medicine and the unethical nature of human
experiments (thus a clear prerogative of medical ethics), the film succinctly captures
different perspectives and their reasoning, the continuous dilemmas of the main
protagonist (the nurse Miss Evers), role of science, weighing risks and benefits
(including what constitutes benefits, whose benefits) and role of contexts in ethics
(racism, resource poor settings, power and information asymmetry) while introduc-
ing students to notions of risk, harm, deceptions, evidence/data, fairness, informed
consent, health communication, etc. which they encountered throughout the course.
In addition, the film titled “Something Like a War” (2003) also worked well in elic-
iting rich discussion on consent, coercion, science, individual vis-a-vis larger good,
vulnerability and procedural justice in the context of large-scale public health pro-
gram. Films have been used as an effective pedagogical tool in discussing ethical
principles in medicine (Searight and Allmayer 2014). However it is not the films per
se but how the discussion unfolds in a class setting is equally critical.
The use of case study methodology in public health ethics in enhancing active
student learning in appreciating the complexity, decision-making skills and applica-
tion of philosophical principles to real-world contexts and understanding different
multiple perspectives has been widely noted (Bhan 2010; Howard et al. 2004;
Braunack-Mayer 2010; Schroder Back et al. 2014). This methodology helps in dis-
cussing ethical issues because the issues discussed in public health are not very
clear cut thus allowing a relatively open-ended discussion on how to apply ethical
principles and reasoning to situations that students could relate to. One of the impor-
tant objectives of the case study methodology is to help students build capacity for
working in groups thus drawing on each other’s personal and professional experi-
ence/moral worlds while discussing the issues at hand. The conflicts that may pos-
sibly occur and ways that the members of the group resolve are critical to the process
of deliberations and resolutions.
Considering the size of the class, students were divided into four groups with five
students in each with one group having six. Each of them was given a case study.
The overall guidelines remain the same for all. However specific questions to pro-
voke discussion were provided for each of the case studies. The guiding questions
were important as the course gradually sought to develop the ability to identify and
raise ethical questions. The selection of case studies was based on the consideration
that these covered different kinds of public health issues and different settings.
Students were asked to present both the processes of deliberation (what happened in
the group discussion) and its outcomes. Students greatly appreciated the case study
methodology and analysis though they did share that the group deliberations were
tough. They wrote this in their reflection notes:
186 A. Mishra

Discussing case studies helped us gain a realistic understanding of ethical issues. I possibly
cannot imagine taking this course without having discussed specific real cases.
Though exciting, it was equally challenging to discuss the case study. We debated and dif-
fered significantly in identifying what the ethical issue was in the case study. Resolutions of
the issue were tougher. Our group discussed the case study on situating reproductive rights.
Some thought it was family planning and the conflict between a ‘nanny’ state and individual
choice was the key ethical issue while I thought it was about reproductive rights and access
to safe abortion services (for which there is a law that defines what is right and wrong).
Perhaps it was somewhere our own gender background and specific experiences that were
coming in our way to do the case study analysis. At the end of the discussion, I felt I still
had many unanswered questions raised about the case study than any resolution yet it was
a strange feeling because I did not realize that even a case study on such a familiar theme
could raise so many questions. So I feel good to have identified the same though do not have
the answers

Each group had a different experience to share and each chose its own ways to pres-
ent it. While one group acted out the different characters in the case study, others
divided the work presenting each aspect of the case study analysis. The presenta-
tions revealed the group dynamics and often disagreements surfaced during the
presentation. The group case study analysis was meant to draw students’ attention
to the difficulty and complexity of decision-making process in teams in any organi-
zational setting. The presentations to the larger group and feedback helped soothing
some of the unresolved issues and broadening the contours of analysis in some
cases. The case study analysis elicited different reactions. Some felt relieved to be
able to see through issues in a systematic way, while for some others it led to
moments of frustration saying things are so complex and everything seems prob-
lematic. Such frustration is natural as a student confided that:
I had never thought that one needs to ask so many questions in understanding what happens
and why it happens. As a natural tendency, we feel comfortable in asking the surface level
questions. Deepening inquiry unsettles our minds but I understand it is necessary. Social
justice is not business as usual.

Some of these settled down when they started developing individual case study.
We discussed at length why resolution does not mean a clear-cut solution rather
continuous deliberations and reflections (knowing and weighing the consequences
of specific decisions in a particular context and time informed by ethical principles)
in itself are part of the resolution. During class discussions, case scenarios were also
included that had reflective accounts of the authors of resolving the dilemmas in a
specific way. Students were asked to think through how they would respond to the
way the ethical issue was resolved and if they were in the same position and context,
would they have done differently and why so.
For individual case studies, students chose a range of ideas. Some students chose
to revisit their earlier work done either as part of an organization or independent
field project to approach it afresh through an ethical lens. Some others developed
new case study ideas in developing a communication campaign on sanitation in a
slum area, evaluation of existing health insurance schemes, community mental
health program or a formative research on assessing the feasibility of a community-­
based intervention to address malnutrition among children.
10 “Now We Feel Ethics Is Everywhere”: Reflections on Teaching a Course on Ethics… 187

Conclusion

Teaching this course has been a collective journey with the students. Like any other
collective enterprise, we have had our moments of pessimism, sadness as well as
hopes and elation in a shared endeavour. My experiences of offering a course like
this also have made me realize the need and immense scope in taking on the role of
a “co-learner” while being a facilitator, where a response or reaction from the stu-
dents has been the lead for a dimension I had not planned. Many such responses
evolved when engaging with one another’s experiences and perspectives. Students
interestingly expanded understanding and application of existing concepts including
consent or beneficence. Another important reflection is that courses such as this one
can have clear-cut learning objectives, but the processes do have to evolve organi-
cally both in terms of methodology development and student engagement. Hence a
course (even as I offer it second time as I write this chapter) is dynamic and evolves
in terms of student engagement in responding to the case scenarios and thinking of
resolutions and nature of collective deliberations.
The course is meant to expand students’ horizon in applying an ethical lens and
not a routine application of guidelines, and it reasonably succeeded in doing the
same. One of the students shares her learning of the course:
Before opting for this course, I had a general, surface understanding of ethics. But the vari-
ous layers of what it really means to work ethically were peeled and explored only in this
class. It was in this course that we went about discussing consent, for example, beyond a
written consent form. We learned how in practice consent goes much beyond a thumb print
or signature on a piece of paper that we as researchers use to get an ethical approval. The
course for me was crucial in terms of discussing and deliberating ethics in our work and the
nuances of it. It set a base for raising the correct questions in any research or intervention
that we intend to be a part of. It has helped me gain clarity about the guiding principles that
would help me resolve any ethical dilemmas that would arise when I go to apply my learnings
of my MA Development programme to the real world challenges

Another student shares a light moment at the end of the course saying “Now we
feel ethics is everywhere”.
The objectives, course content and pedagogical measures of such courses are not
self-contained or complete. This is at best forms the foundational tenet and trigger
for students and young practitioners to start the self-reflective evolution of their
journey in health ethics. One of the biggest risks for such well-intentioned efforts is
to look at it as complete when it is only the first step in the process of learning itself
in a field full of complexity and change. The goal of public health is large, and one
needs concerted efforts to nurture socially and ethically committed health profes-
sionals to work for this noble endeavour. The university is uniquely positioned
through its continuing educations programs, field connect and masters’ programs to
reach out to many professionals seeking to contribute to public health practice to
join this shared journey in learning Ethics in Public Health Practice.5

5
The university offers a week-long course on Ethics in public health practice to in-service profes-
sionals; see www.azimpremjiuniversity.edu.in/http://azimpremjiuniversity.edu.in/SitePages/
University-resource-centre-events-ethics-in-public-health-practice-2018.aspx.
188 A. Mishra

Acknowledgements This chapter is a collective journey of learning and reflecting with my stu-
dents who opted for this course. I owe sincerest thanks to all the students of both the batches in
2015–2017 and 2016–2018 in the elective on Ethics in Public Health Practice. Special note of
thanks to Arvind, Bhakti, Deep, Pawan and Eshani who have shared their detailed reflections
beyond the assignments. I have also learnt a lot from the participants in the short course on Ethics
in Public Health Practice which I anchored. I extend sincere thanks to my colleagues – Benson,
Shreelata, Sreeparna, Prasanna and Stefi – who co-facilitated the short course. Kalyani (my former
colleague and co-editor of this volume) deserves a special mention for co-desigining this course
and sharing critical inputs to the draft of this chapter.

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Web Links

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Correction to: Data Ethics
in Epidemiology: Autonomy, Privacy,
Confidentiality and Justice

Vijayaprasad Gopichandran and Varalakshmi Elango

Correction to:
Chapter 7 in: A. Mishra, K. Subbiah (eds.),
Ethics in Public Health Practice in India,
https://doi.org/10.1007/978-981-13-2450-5_7

The original version of Chapter 7 was inadvertently published with incorrect

­surname of the second author. The surname of the second author was presented
incorrectly as Elang. The correct surname of the second author should read Elango.
The chapter has been updated.

The updated online version of this chapter can be found at

https://doi.org/10.1007/978-981-13-2450-5_7

© Springer Nature Singapore Pte Ltd. 2018 E1

A. Mishra, K. Subbiah (eds.), Ethics in Public Health Practice in India,
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