Collecting data

While considerable attention has been focused on understanding the myriad of ethical analysis in international research in low- and middle-income countries, new issues always arise that have not been anticipated in guidelines or studied extensively. The disruption of medical care arising as a direct result of political actions, including strikes, post-election violence and related activities, is one such issue that leaves physician-researchers struggling to manage often conflicting professional responsibilities. This paper discusses the ethical conflicts that arise for physician-researchers, particularly when disruption threatens the completion of a study or completion is possible but at the expense of not addressing unmet medical needs of patients. We review three pragmatic strategies and the ethical issues arising from each: not starting research, stopping research that has already started, and continuing research already initiated. We argue that during episodes of medical care disruption, research that has been started can be continued only if the ethical standards imposed at the beginning of the study can continue to be met; however, studies that have been approved but not yet started should not begin until the disruption has ended and ethical standards can again be assured.

House D.R., Marete I. and Meslin E.M. (2016) To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya, J Med Ethics, 2016;42:61–65

The notion that there is a universal ethics is commonly supposed, but less often explicitly discussed, in protocols for ethical procedures in research. In this article, the authors reflect on their action-research with women farmers in a Bolivian highland province. Their project aims to propose ways in which local health services could better serve these women’s expressed sexual and reproductive health needs. A series of field experiences led the authors to question the adequacy of pre-established institutional protocols for informed consent. Cultural understandings in this context made for situations where supposedly ethical procedures led to unethical effects. While recognising the value of precautionary measures to avoid abuse of research subjects, the authors challenge the assumption of subjects’ essential vulnerability in fieldwork relations. They found that they too, as researchers and outsiders to the community, could be assigned less than adult status by research subjects seeking empowerment in their own terms. The paper concludes that consent protocols, rather than relying on standardised procedures, should provide flexible alternatives to facilitate negotiation with subjects about whether and how they will participate at different stages of a research project.

Mulder, S. S. et al (2000) Unethical ethics? Reflections on intercultural research practices, Reproductive Health Matters Volume 8, 2000 – Issue 15: Reproductive rights, human rights and ethics

By summarising papers delivered at a conference in Kilifi, Kenya this article provides useful learning on relationships in the health research process. The authors argue that more should be done to understand the ethics of relationships between “whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations.” It explores how our failure to be led by the ethical perceptions and feedback of ‘studied’ communities and those field workers and research assistants who are on the frontline of research practice can weaken our analysis. It also raises questions about the utility of ethics checklists and standard operating procedures that may stifle rather than strengthen the lively interplay of every day dialogue about ethics and privilege global agendas over more context specific analysis.

Molyneux, C.S. and Geissler, W. (2008) Editorial: Ethics and ethnography in medical research in Africa. Social Science & Medicine, 67(5): 685-695

Anonymity is accepted as necessary for the generation of empirical knowledge concerning human research participants, especially for members of “vulnerable” groups. In particular, anonymity has been given a role in easing the challenges of giving voice to experiences that disrupt familiar and convenient paradigms of knowledge. This paper troubles such a notion, on the grounds that anonymity may undermine the acceptance of such experiences as evidence and reinforce the kind of epistemic politics that treats some assertions as incontrovertible, while silencing others. An uncritical acceptance of anonymity generates concerns about representation, voice, and authorship in research, particularly amongst disadvantaged communities.

Berkhout, S. G. (2013) Private talk: Testimony, evidence, and the practice of anonymization in research, International Journal of Feminist Approaches to Bioethics, Vol. 6, No. 1 (Spring 2013), pp. 19-45

The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) considering more centrally, as crucial ethical concerns, the wider interests of whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations. We see the two areas of debate and action as complementary, and believe that social science conducted in and around transnational medical research environments can bring these two perspectives together in a more ‘situated ethics’ of research. To explore this idea for medical research in Africa, we organized a conference in December 2005 in Kilifi, Kenya. In this introduction we outline the two emerging approaches to medical ethics, summarise each of seven papers selected from the conference for inclusion in this special issue on ethics and ethnography, and finally highlight two areas of lively debate at the conference itself: the appropriateness and value of ethics guidelines and review boards for medical research; and the ethical review of social science research. Together, the papers and debates point to the importance of focusing on the ethics of relationships and on justice in both biomedicine and social science research, and on giving greater voice and visibility to the field staff who often play a crucial and under-supported role in ‘doing ethics’ in the field. They also point to the potential value of social science research on the range of relationships operating at different levels and time scales in medical research, including those surrounding community engagement activities, and the role and functioning of ethics review boards. We conclude by highlighting the ethical priority of capacity strengthening in medical research, social science and research ethics in Africa to ensure that local and national priorities and concerns are considered at both the micro and macro levels.

Molyneux S. and Geissler P.W. (2008) Ethics and the ethnography of medical research in Africa, Soc Sci Med. 2008 Sep;67(5):685-95

This book is a collection of fictionalised case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of global, political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines and their implementation on the ground. The case studies focus on ‘relational’ ethics: ethical actions and ideas that emerge through relations with others, rather than in regulations. The book is a flexible resource for training across a variety of contexts, such as medical research organizations, universities, collaborative sites, and NGOs, and for everyone interested in the realities of global health research today. The book is divided into two main parts: training case studies for global health researchers, and academic background. The 42 total training case studies presented in part I are further divided into four sections focusing on the different types of relationships that characterize the practice of global health research: researcher-participant relationships (15 chapters), community and family relationships (12 chapters), institutional relationships (10 chapters), and staff relationships (5 chapters). Each chapter in this first part of the book is composed of an introduction and guidelines page for training facilitators, and a handout for individual or group use (which includes the case study, questions to prompt discussion, and selected further readings). The collection of case studies is followed by guidance on how to use the training case studies. Part II of the book provides a more in-depth discussion of the key perspectives informing the research approach, an analysis of the context of transnational medical research in Africa, and an outline of what anthropology and the social sciences can offer.

Aellah G., Chantler T. and Geissler P. W. (2016) Global health research in an unequal world: ethics case studies from Africa, C.A.B. International

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.

Kingori P. (2013) Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics, Soc Sci Med. 2013 Dec; 98: 361–370

There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential ‘solutions’ to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications.

Molyneux S. et al (2016) Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya, Developing World Bio-ethics, Volume 16, Issue 3, December 2016, Pages 168–177

This issue of Developing World Bioethics includes a collection of papers on intermediary staff and volunteers working at the interface between research institutions and researchers, and the communities from which research participants are recruited. ‘Field worker’ – a short hand commonly used in many research settings – refers here to those whose main role is face-to-face engagement with participants, who usually speak the participants’ first language, who are from or live in the study areas, and whose work entails moving around the study areas or health facilities. There is growing interest in field staff and volunteers’ role at the interface in international research settings, and in the implications of their activities and challenges for ethical practice. In mediating between the often very different priorities and concerns of well-resourced research institutions, and relatively poor communities without good access to quality affordable health care, field workers are not simply neutrally observing, and adhering to formal, externally derived ethical rules, but instead play ‘a vital, creative, and under-recognised role in research and ethics practice’.

Molyneux S., Kamuya D., Adhiambo Madiega P., Chantler T., Angwenyi V., and Geissler P.W. (2013) Field workers at the interface, Dev World Bioeth. 2013 Apr; 13(1): ii–iv