When Humans Become Data

2024

We worked on a paper assessing research transparency in CHI publications but decided to anonymize the dataset before publication. Behind this counterintuitive choice are several lessons for researchers interested in making their work more transparent, and developers of data repositories. BACKGROUND: WHAT IS RESEARCH TRANSPARENCY? Research transparency refers to disclosing details of processes and materials involved in a research project-from research design to reporting. Examples of transparent practices are preregistration and sharing research materials, data, and code. These practices could increase rigor and credibility and allow the scholarly community to build upon them.

Social Studies of Science, 2019

On May 25, 2018, the European Union’s General Data Protection Regulation (GDPR) came into force. EU citizens are granted more control over personal data while companies and organizations are charged with increased responsibility enshrined in broad principles like transparency and accountability. Given the scope of the regulation, which aims to harmonize data practices across 28 member states with different concerns about data collection, the GDPR has significant consequences for individuals in the EU and globally. While the GDPR is primarily intended to regulate tech companies, it also has important implications for data use in scientific research. Drawing on ethnographic fieldwork with researchers, lawyers and legal scholars in Sweden, I argue that the GDPR’s flexible accountability principle effectively encourages researchers to reflect on their ethical responsibility but can also become a source of anxiety and produce unexpected results. Many researchers I spoke with expressed profound uncertainty about ‘impossible’ legal requirements for research data use. Despite the availability of legal texts and interpretations, I suggest we should take researchers’ concerns about ‘unknowable’ data law seriously. Many researchers’ sense of legal ambiguity led them to rethink their data practices and themselves as ethical subjects through an orientation to what they imagined as the ‘real people behind the data’, variously formulated as a Swedish population desiring data use for social benefit or a transnational public eager for research results. The intentions attributed to people, populations and publics – whom researchers only encountered in the abstract form of data – lent ethical weight to various and sometimes conflicting decisions about data security and sharing. Ultimately, researchers’ anxieties about their inability to discern the desires of the ‘real people’ lent new appeal to solutions, however flawed, that promised to alleviate the ethical burden of personal data.

Social Science & Medicine, 2013

Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical attention given to 'the what' and 'the why' in bioethics - what action is taken place and why - these should be considered along 'the who' - who are the individuals tasked with bioethics and what can their insights bring to macro-level and abstract discussions of bioethics. This paper will draw on the philosophical theories of Paul Ricoeur which compliments a sociological examination of data collectors experiences and use of their agency coupled with a concern for contextual and institutional factors in which they worked. In emphasising everyday experiences and contexts, I will argue that data collectors' practice of bioethics was shaped by their position at the frontline of face-to-face interactions with medical research participants and community members, alongside their own personal ethical values and motivations. Institutional interpretations of bioethics also imposed certain parameters on their bioethical practice but these were generally peripheral to their sense of obligation and the expectations conferred in witnessing the needs and suffering of those they encountered during their quotidian research duties. This paper will demonstrate that although the principle of autonomy has dominated discussions of bioethics and gaining informed consent seen as a central facet of ethical research by many research institutions, for data collectors this principle was seldom the most important marker of their ethical practice. Instead, data collectors were concerned with remedying the dilemmas they encountered through enacting their own interpretations of justice and beneficence and imposing their own agency on the circumstances they experienced. Their practice of bioethics demonstrates their contribution to the conduct of research and the shortcomings of an over-emphasis on autonomy.

International Journal of Computer Science and Information Security (IJCSIS), Vol. 23, No. 1, January-February , 2025

Abstract - In an age of swift progress in data collection and analysis, ethical considerations are crucial for maintaining the integrity and accountability of research practices. To prevent skewed results and misinformation among stakeholders, researchers must avoid selective reporting or data manipulation, upholding their ethical obligation to report data accurately and transparently. This research report explores data ethics from 2019 to 2024, highlighting critical challenges in balancing technological advancement with ethical principles across healthcare, research, and digital environments. The study reveals significant gaps in current practices by examining informed consent, privacy, algorithmic bias, and data sovereignty which calls for more comprehensive approaches to data governance. Keywords: Ethics, Digital Data, Eligibility criteria, informed consent

Journal of Academic Ethics, 2019

Confidentiality represents a core principle of research ethics and forms a standard practice in social research. However, what should a researcher do if they learn about illegal activities or harm during the research process? Few systematic studies consider researchers' attitudes and reactions in such situations. This paper analyzes this issue on the basis of in-depth interviews with Polish sociologists and anthropologists who conduct qualitative research with vulnerable participants. It discusses the experiences and opinions of researchers concerning the maintenance or breaking of confidentiality in the context of knowledge about illegal activities and harm. It also examines the ways in which the researchers justified their decisions. Most of my interviewees respected confidentiality in spite of knowledge of crime or harm, and referred to their epistemological perspectives regarding the role of the researcher, implicit conse-quentialist ethical reasoning and personal values. Where researchers did break confidentiality , this owed to their personal values and willingness to protect their informants, especially in cases of minor levels of harm as opposed to serious crime. Therefore, their experiences indicate the failure of both obligatory unconditional assurances of confidentiality and the requirement for researchers to assure confidentiality to the extent permitted by law. I argue that researchers do not need constrictive and potentially punitive rules about confidentiality, but rather sensitizing frameworks about how to contemplate and anticipate the many complexities and moral shadings of situations in the field.

The Professional Geographer, 2021

Building on critical readings of the rationalities behind ethical committees and their guidelines, this article analyzes how their positivist, biomedical conception of the research process can have a negative impact on research participants who might perceive their voices erased by these institutional practices. Using examples from my recent research with gay men living with HIV in England and Italy, I show how research participants have contested the General Data Protection Regulation guidelines I was following in relation to the use of pseudonyms and the depersonalization of data and the sharing of interview transcripts. Questioning the fixity of the position of the researcher and the research participants assumed in ethical guidelines, the article explores the impact of the encounter with research participants on the researcher’s life course well beyond data collection and analysis, emphasizing the need for a different care ethics.

Ethnography, 2019

Tracing the afterlife of our explorative article on marriages of Dutch-speaking women travelling to areas held by jihadist movements in Syria, we analyze the harm the celebration of transparency may do. Through an auto-ethnographic reflection, we address how the demand for transparency was used in a media hype that engendered parliamentary questions and an external reflection audit. To understand the appeal to transparency , we argue for the need to relate anthropological ethics to epistemological concerns, and to link transparency to power. Whereas anthropological research needs some level of trust and confidentiality, the quest for transparency starts from distrust and an impetus to control. Neoliberal forms of public management make universities vulnerable to external pressure, with anthropology as an interpretative discipline that values complexity an easy target. Researchers who are recognizably Muslim are exposed to particular harm as heightened ethno-nationalism and an anti-Islam political climate produce them as a category already 'under suspicion'.

Ethnography and Education, 2010

Drawing on findings from an ethnographic study of Romani Gypsy groups in England (1996-2000), along with data from follow-up work involving original and additional participants (2005ongoing), this paper explores several ethical issues that arose. It traces developing relationships across a thirteen year period, identifying the problems of attempting to construct a 'research community' consisting of individuals with diverse lifestyles, and at times, conflicting agendas. It problematises issues concerning the negotiation and maintenance of access, and considers, also, the prioritization of certain voices at the expense of others, and the difficulties of 'openness' when the researcher is unsure where a project is heading. Rather than engaging with a full literature review of the themes discussed, this paper seeks to highlight the situated negotiation of ethics within a specific research context. The focus is on shifting events in which official codes of practice do not seem to provide an adequate means of navigation. The paper argues that it is not sufficient for the researcher to pay lip-service to superficial guidelines, calling, instead, for deeper reflection that might lead to greater honesty with both oneself and the community/communities involved in research. It implies a need to react quickly to events in the field, informing participants about any perceived flaws and ambiguities in the original research design that may have emerged during data collection and led to changes of direction. Finally, it recommends that participants are fully involved in processes, including those that are interpretive, and that they, too, share any benefit of considering the research study, retrospectively, as an historical artefact.

This is an introduction to the special issue of “Ethics as Methods: Doing Ethics in the Era of Big Data Research.” Building on a variety of theoretical paradigms (i.e., critical theory, [new] materialism, feminist ethics, theory of cultural techniques) and frameworks (i.e., contextual integrity, deflationary perspective, ethics of care), the Special Issue contributes specific cases and fine-grained conceptual distinctions to ongoing discussions about the ethics in data-driven research. In the second decade of the 21st century, a grand narrative is emerging that posits knowledge derived from data analytics as true, because of the objective qualities of data, their means of collection and analysis, and the sheer size of the data set. The by-product of this grand narrative is that the qualitative aspects of behavior and experience that form the data are diminished, and the human is removed from the process of analysis. This situates data science as a process of analysis performed by the tool, which obscures human decisions in the process. The scholars involved in this Special Issue problematize the assumptions and trends in big data research and point out the crisis in accountability that emerges from using such data to make societal interventions. Our collaborators offer a range of answers to the question of how to configure ethics through a methodological framework in the context of the prevalence of big data, neural networks, and automated, algorithmic governance of much of human socia(bi)lity.