10/10/2019 BIOETHICS

NAME :
KIRAN SHAHZADI
ROLL NO:
051631019
CLASS :
BS ( HONS)
SEMESTER:
7TH
MAJOR:
BOTANY
SESSION:
2016-2020
ASSIGNMENT TOPIC:
BIOETHICS
SUBMITTED TO:
MAM ANJUM
GHAZANFAR ALI
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Bioethics
Introduction
The term “bioethics,” originally coined by Von Rensselaer in 1970, has evolved
from a more specific emphasis upon medical ethics to include a wide range of issues
such as allocation of healthcare resources, end-of-life treatment, euthanasia and
physician-assisted suicide, reproductive technologies, genetic intervention, stem cell
research, cloning, neuroscience, and other emerging biotechnologies
, Bioethics refers to the “ethics” of “life” or perhaps more specifically the “ethics of
the life sciences,” “Bioethics” is a term with two parts, and each needs some
explanation. Here, “ethics” refers to the identification, study, and resolution or
mitigation of conflicts among competing values or goals. The ethical question is,
“What should we do, all things considered?” The “bio” puts the ethical question into
a particular context.

Bioethics is commonly understood to refer to the ethical implications and

applications of the health-related life sciences. These implications can run the entire
length of the bench-to-bedside “translational pipeline.” Dilemmas can arise for the
basic scientist who wants to develop synthetic embryos to better study embryonic
and fetal development, but is not sure just how real the embryos can be without
running into moral limits on their later destruction. How much should the scientist
worry about their potential uses?

Once treatments or drugs are in clinical trials involving human subjects, a new set
of challenges arise, from ensuring informed consent, to protecting vulnerable
research participants to guarantee their participation is voluntary and informed.
Eventually, some of these new approaches exit the pipeline and are put into practice,
where providers, patients, and families struggle with how to best align the risks and
benefits of treatment with the patient’s best interest and goals. The added costs of
new therapies inevitably strain available resources, forcing hard choices about how
to fairly serve the needs of all, especially those already underserved by the health
care system.

Questions in bioethics aren’t just for “experts.” Discussions of bioethical challenges

take place in the media, in the academy, in classrooms, but also in labs, offices, and
hospital wards. They involve not just doctors, but patients, not just scientists and
politicians, but the general public.
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Awareness about ethics of genetics

Completion of the Human Genome Project in 2003 provided a “rough draft” of the
human genetic code, with more details added almost daily. Current research is aimed
at two major goals:

1) predicting and diagnosing disease

2) medical treatments.

 There are deep ethical implications to all of this. The manipulation of our own
nature may seem to break certain traditional limits. There is a sense of
uneasiness about the process, and concerns about altering human nature itself.
The purpose of this article is simply to provide conceptual clarity about these
complex and often technical issues, without delving into the ethical arguments
themselves.

 DNA (deoxyribonucleic acid) is an information-carrying molecule found

primarily in the nucleus of all human cells. It acts as a “blueprint” to direct
protein synthesis in the human body, and thereby control development,
growth, metabolism, gender, and a myriad of other traits that make each one
of us unique. No two human beings have the same genetic code; even identical
twins have slight variations.2 The entire blueprint for each individual is
referred to as the human genome.
 The DNA in a cell’s nucleus is arranged in a sequence of bases,
called nucleotides, arranged in pairs (base pairs). Millions of DNA base pairs
are coiled into cylindrical structures called chromosomes, located in each cell
nucleus. Human beings have 23 pairs of chromosomes, for a total of 46. An
individual packet of genetic information is called a gene. There are 20,000 to
25,000 genes in the human genome, located in various chromosomes.
 Genetic sequencing uses a variety of sophisticated biochemical techniques to
determine the exact order of base pairs in a given chromosome. Alterations in
the normal sequence may result from mutations, caused by deletions,
substitutions, or additions of one or more base pairs. Such mutations may have
deleterious effects, leading either to genetically-based diseases or to an
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increased susceptibility to chronic illnesses such as diabetes, heart disease,

and various cancers.
 The ethical and philosophical issues surrounding new awareness of the human
genome center on three core concerns:
 privacy and confidentiality
 genetic testing
 altering the genetic code through genetic therapies. In the area of privacy and
confidentiality, the key issue is how scientists, physicians, employers,
insurance companies, and other interested parties may ethically use an
individual’s genetic information.
 For example, the BRCA1 and BRCA2 genes confer a five-fold increase in
lifetime risk of developing breast cancer in women with this mutation. Such
information could potentially be used by health insurance companies to deny
coverage to women who test positive for these markers, or at least to make
their coverage more costly. The recently passed Genetic Information
Nondiscrimination Act of 2008 makes such a move illegal, and makes
discrimination in the workplace based on genetic traits also unlawful.

 Another concern in this age of increased genetic information is the idea of

ownership. Who owns the information obtained from the sequencing of genes
and other pieces of DNA? Who will have access to it? Can genes be patented
in order to protect proprietary research protocols, drugs, and treatments
arising from the information?

 The second major domain for ethical concern is that of genetic testing. How
reliable and useful is the information obtained, and for what will it be used?
In the unborn, prenatal genetic screening may take place by amniocentesis, a
sterile technique where a needle is passed directly into the amniotic cavity
surrounding the fetus in the uterus. Cells found in the withdrawn fluid are then
tested for genetic anomalies. This procedure cannot be performed before the
twelfth week of pregnancy, and itself carries a 0.5% risk of
miscarriage. Chorionic villus sampling is an alternative procedure involving
a tissue sample obtained through a transcervical catheter and ultrasound
guidance. This can be performed earlier than amniocentesis (about 8 weeks),
but carries an increased risk of miscarriage (1-2%). Frequently, prenatal
testing is used as a justification for induced abortion if certain genetic
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abnormalities are found, such as Down syndrome, Tay-Sachs disease,

Duchenne muscular dystrophy, and sickle-cell disease.
 Genetic testing can also be performed at a much earlier stage in human
development. Preimplantation Genetic Diagnosis (PGD) involves the
testing of embryos produced through in vitro fertilization (IVF). A single cell
is removed from 3 day-old embryos and analyzed for certain genetic markers.
If a genetic abnormality is discovered, such embryos are usually discarded.
Some writers have compared this practice to the historical movement known
as eugenics, an early 20th century practice that involved controlled selective
breeding to “improve” the “genetic fitness” of the human race.
 Genetic testing can also be performed in adults, usually for specific disorders
known to stem from a single mutation of a known region of DNA. An example
is Huntington’s disease, a progressive neurological disorder that afflicts
persons in middle age. On the other hand, most diseases with a genetic
component are multifactorial, meaning that both genetic and environmental
factors influence disease susceptibility. For example, a large (and mostly
unknown) number of genetic mutations leading to an increased susceptibility
to heart disease, diabetes, and certain cancers, in addition to environmental
influences, such as lifestyle and diet. Genetic testing raises the question:
should genetic analysis be performed for disorders where no treatment is
available?

 A final concern is the new arena of genetic therapy. In order to treat a

genetically-based disorder, the “correct” genetic sequence must be inserted
into the nuclei of a person’s cells, to replace the abnormal or mutated gene.
This is possible through the use of a delivery vehicle, referred to as
a vector (usually a virus), to insert new genetic information into cells. An
example will help make this idea more clear.
 Cystic fibrosis is a genetic disorder caused by an abnormality in a transport
protein for chloride. In the bronchial tubes of the lungs, this results in
thickened secretions and continuous lung damage, leading to chronic illness
and a greatly decreased life expectancy. Recent clinical trials have studied the
use of a modified common cold virus (as a vector), to which the corrected
gene has been inserted. Patients are infected with the modified virus, which
inserts its DNA (including the corrected chloride transport gene) into the
lungs. The bronchial tubes can then transport chloride ion normally, and
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symptoms improve. Unfortunately, the salutary effects are only temporary at

present.
 The above is an example of a somatic cell gene therapy. This involves
alteration of the genes of an affected individual, often only in a target organ
or tissue. The modified cells are somatic cells, or non-reproductive cells. Even
if the change could be made to last longer, the modified genome would not be
transmitted to future offspring.
 This is in contrast to germ-line gene therapy, which involves the alteration
of germ-line cells (sperm cells or ova) of an individual, so that offspring are
also affected by the change. In other words, the changed genetic
characteristics would be passed on to subsequent generations. Some ethicists
would draw a line here and outlaw germ-line treatments, with the idea that
effects on future humanity are too difficult to predict.
 The forgoing examples have focused on attempts to treat genetically-based
diseases or disabilities. But some authors have suggested that genetic
modifications be done for enhancement purposes. This idea would go
beyond genetic therapy to actual “improvements” of human abilities and
perhaps even human nature itself (e.g., correcting eyesight to greater than
20/20, improving memory, or even extending life beyond current limits). The
treatment vs. enhancement debate will continue to be important as the
technology progresses.

Below you will find information on some specific areas within bioethics, as well as
connections to a variety of related educational resources.
Islamic bioethics

Islamic bioethics emphasizes the importance of preventing illness, but when

prevention fails, it provides guidance not only to the practicing physician but also to
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the patient.The physician understands the duty to strive to heal, acknowledging God
as the ultimate healer. Islamic bioethics teaches that the patient must be treated with
respect and compassion and that the physical, mental and spiritual dimensions of the
illness experience be taken into account. It appears in the 1981 Islamic Code of
Medical Ethics,which deals with many modern biomedical issues such as organ
transplantation and assisted reproduction.

Clinical Ethics

Clinical ethics is a practical discipline that aims to resolve ethical

questions or disagreements that emerge in the practice of health care. Clinical
ethicists work to identify, analyze, and resolve value conflicts that arise when
providers, patients, families, surrogates, and other stakeholders disagree or are
uncertain about the ethically best course of action. For example, patients or their
surrogates may refuse recommended treatments or demand non-beneficial
treatments, which puts their requests at odds with providers’ medical judgment.
Clinical ethicists help to identify and clarify ethical questions, find ethically
acceptable courses of action, encourage honest and respectful communication
between all parties, and recommend ethically acceptable solutions for the case at
hand. Clinical ethics also works to improve institutional responses to ethical
dilemmas through education and policy formation.
Health Policy

Health policy is about governmental efforts to manage health care as a

public good. Government must assure access to needed health care for all,
incentivize curative research, protect health quality, and control health care costs.
Justice is the moral value most pertinent to health policy, given large public
investments in creating our health care system. Consequently, bioethicists ask
whether it is just that an individual’s access to needed, costly and effective care
should depend upon an individual’s ability to pay, or the willingness of a state
legislature to adequately fund the Medicaid program for the poor? Should the
genetically healthy and fortunate help pay the health care costs of the genetically
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unhealthy and unfortunate? A just and caring society must address these questions
through thoughtful bioethical inquiry and respectful democratic deliberation.
Genetics

Much of medicine today is about genetics, whether for disease prevention,

diagnosis, treatment, or reproductive decision-making. Emerging genetic
technologies and knowledge generate numerous value conflicts. Consequently,
bioethicists ask what is ethically appropriate if individuals have a mutation for a
serious and now untreatable genetic disorder. Are those individuals ethically
obligated to sacrifice their privacy rights to inform at-risk relatives? What are the
ethical obligations for the best interests of future possible children on the part of
parents considering whether and how to have children, when whole genome
sequencing indicates serious potential risks associated with conceiving those
children? Should social policies govern such decisions? Should those policies
protect parental procreative liberty or enhance social responsibility for the best
interests of those future possible children? This is bioethics in the age of genomics.
Neuroethics

As our ability to understand, measure, and manipulate the functioning of

the human brain and nervous system rapidly advances, so too does our need to
grapple with the ethical, social, and legal implications of these tools and
neuroscientific knowledge. Neuroethics is an interdisciplinary research area that
involves systematizing, defending, and recommending paths to action to address
those issues. Neuroethics is also a platform for engaging different stakeholders to
interact and discuss the future of neuroscience and neurotechnologies. That platform
can take theoretical but also empirical and pragmatic approaches to the issues it
covers, including the use of neuroenhancement drugs, memory dampening
techniques, neural prostheses, the clinical and non-clinical uses of neuroimaging,
and policy issues around neurotechologies. Neuroethics brings to light theoretical
and reflective issues regarding how we think about and treat each other.
Clinical Neuroethics
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Clinical neuroethics is a field at the intersection of neuroethics and clinical ethics,

two dynamic and exciting disciplines. While neuroethics has developed at a time
that neuroscience is making significant discoveries and developments at a rapid
pace, clinical ethical questions have been on the table since the beginning of
medicine. Clinical neuroethics combines these well-established issues with
issues raised by interventions, drugs, and treatments that impact mental and
neurological states. For example, the use of ventilators generated questions about
who is alive and who is dead, as ventilators could keep blood circulating and
oxygen flowing. Now, imaging tools can detect brain functions in those who
appear clinically dead, and these questions arise anew. Clinical neuroethics
addresses topics such as consciousness, death, deep brain stimulation, pain, and
enhancement in the clinical setting.
Precision Medicine

Precision medicine is often ethically ambiguous. Precision medicine is

about very expensive cancer drugs designed to target the genetic “drivers” of a
metastatic cancer. In the U.S., ninety of these drugs have FDA approval and costs of
$100,000 or more per year, with some therapies (CAR-T cell therapies) priced at
$475,000. Some of these drugs are very effective. Imatinib (Gleevec) for chronic
myeloid leukemia will yield more than ten extra years of life for 70% of these
patients, but at $135,000 per year. Most, however, yield only extra months of life at
very high cost. One goal of precision medicine is identify biomarkers that predict
effectiveness in individuals. What then? Do we deny the drugs to patients who very
likely (not certainly) will gain no more than three extra months of life? Is that
limitation either just or caring? Therein lies the ethical ambiguity.
Reproductive Ethics

Reproductive ethics addresses topics that commonly provoke social and legal
controversy, and intimately connect to concerns over reproductive justice. The field
looks at issues related to assisting fertility (assisted reproduction, surrogacy, genetic
manipulation of offspring), restricting fertility (contraception and sterilization),
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terminating a pregnancy (abortion), minors and access, and concerns that are more
general over maternal and fetal best interests. Reproductive ethics examines
perplexing questions: Should we enable people to reproduce after they die? Should
we keep a brain-dead pregnant person on life support to allow for the birth of their
child, or harvest a dead person’s sperm? Should we manipulate the DNA of our
offspring, not only to eliminate entire genetic disorders, but perhaps also to select
superficial traits such as intelligence or athletic ability? Reproductive ethics focuses
on these questions, and more.
Research Ethics

Research ethics addresses a variety of ethical challenges or questions that

arise in the conduct of research, human or animal, clinical or basic science, many of
which are not answered by regulations. For example, the distinction between
“identifiable” and “non-identifiable” is a critical boundary in human subjects
research. Research using data whose human sources are not identifiable is not
subject to the requirement of informed consent. But as the amount and variety of
data (including genetic data) assembled around one individual increases—as
happens in “Big Data” research—the less possible it is to guarantee anonymity to
the sources. Then the question is whether the data is “non-identifiable” enough. That
requires balancing the nature and magnitude of the risks against the research
benefits.
Shared Decision-Making

Effective clinical encounters depend on good communication. With the

goal of arriving at the best possible decision for the individual patient, shared
decision-making is the process whereby a healthcare decision is presented,
discussed, deliberated, and negotiated between the provider and patient. In shared
decision-making, a physician taps their knowledge about the available evidence and
combines it with their experienced clinical judgment to provide balanced
information regarding treatment choices. That information then is communicated to
the patient – allowing them to clarify and determine their healthcare options in light
of their own values and preferences. Shared decision-making evolved from the
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recognition of a patient’s right to autonomy and reflects ethical medical practice.

Recognizing that there are two experts in the room, shared decision-making is the
pinnacle of patient-centered care.
Social Determinants of Health

In the clinical encounter, patients bring complex social circumstances

that are a consequence of their physical and social environment and access to
resources. Limitations on those resources determine a patient's ability to prevent
illness, maintain health, and recover when illness occurs. Social justice draws our
attention to disparities in health and asks not only that we recognize such disparities
– it also requires us to actively work toward solutions both for the individual and the
population as a whole. Learning about and respecting a patient’s socially-
circumscribed access to resources can enhance the patient-doctor relationship. Even
with the expanding emphasis on genetics and precision medicine, it remains the case
that "it’s zip code not genetic code” – where a person lives as well as their related
social experiences have a profound impact on their health.