Global Health Research in an Unequal World

Front matter

es f z po YOU WNE TV, a eS ram aS, FRIDGES, ta al ay a: , FR A i

A ene en j “a

Global Health Research in an Unequal World Ethics case studies from Africa

Preface

Conducting good, ethical global health research is now more important than ever. Increased global mobility and connectivity mean that in today’s world there is no such thing as ‘local health’. How we experience the effects of disease may be shaped by our particular social and political-economic circumstances, but the sick in one part of the world and the healthy in another are connected through economics, politics, media, and imagination, as well as by the infectiousness of disease. Global health research carried out through transnational collaboration is one crucial way in which people from far-flung geographic regions relate to each other. Good global health research, and the relationships it creates, therefore, concerns us all.

This book is a collection of fictionalized case studies of everyday ethical dilemmas and challenges often encountered in the process of conducting global health research in Africa where the effects of global, political and economic inequality are particularly evident. Our aim is to create a training tool which can begin to fill the gap between research ethics guidelines and their implementation ‘on the ground’. The case studies, therefore, focus on everyday or ‘relational’ ethics: ethical actions and ideas that emerge through relations with others in context, rather than in universal principles or abstract regulations.

The fictional case studies are based on stories and experiences collected by a group of anthropologists who have worked with leading transnational medical research organizations across Africa over the past decade. The stories have been anonymised, combined with each other, and substantially altered in order to provide ‘stumbling stones’ to start discussions, without naming real places or situations.

As a collection, these stories offer a flexible resource for training across a variety of contexts, such as medical research organizations, universities, collaborative sites, and NGOs. We hope they will encourage global health researchers to think - and talk — about their everyday experiences and practices, and about ethics, in a new light.

GEMMA AELLAH TRACEY CHANTLER P. WENZEL GEISSLER

BIRGITTE BRUUN

LUISA ENRIA

ANN H. KELLY

SHELLEY LEES

PHILISTER A. MADIEGA FERDINAND OKWARO FRANCESCA RAPHAELY

JOHNSON A. ONDIEK

The authors and contributors to this book collaborated between 2005 and 2015 in the Anthropologies of African Biosciences Research Group www. africanbiosciences.wo rdpress.com is Research Officer at the Royal Anthropological Institute and a PhD researcher at the London School of Hygiene and Tropical Medicine is Research Fellow at the London School of Hygiene and Tropical Medicine is Professor of Social Anthropology at the University of Oslo, Norway and part-time Director of research at University of Cambridge p.w.geissler@sai.vio.no

© 2016 Gemma Aellah, Tracey Chantler, P.Wenzel Geissler

ACKNOWLEDGEMENTS

We would like to thank the institutions, researchers and research participants across Africa who generously allowed us to learn from their experiences.

Although the case studies are fictional, we hope

that they all recognise the kind of situations described and see them as fair representations of their experiences.

We greatly appreciate the feedback that we received from scientists, ethicists, clinicians, fieldworkers, technical and administrative staff, community advisory board members, students, ethicists, and others, when we presented this project and piloted some of the stories with audiences in Kenya (Kenya Medical Research Institute, Ministry of Health), Norway (University of

Oslo), Tanzania (National Institute for Medical Research), and the UK (London School of Hygiene and Tropical Medicine).

We warmly thank our advisor, Dr John Vulule from the Kenya Medical Research Institute, for his support and guidance throughout this project, and some of the collaborative research that preceded it. Many thanks are also due to our illustrator Jonnson A. Ondiek. As an artist who is also a practising African clinical researcher himself, his cloth paintings bring colour and life to our stories. All artwork is copyrighted to Johnson Alouch Ondiek at jaoarts@yahoo.com Thanks, finally, to Francesca Raphaely who not only proofread the manuscript but also added many a useful comment and query and in the process significantly improved the outcome.

Funding

This project, like much of the preceding research that informed our thinking, has been made possible through funding from the Leverhulme Trust (Research Leadership Award, PW Geissler, F/02 116D) and the Wellcome Trust (e.g., Geissler, GRO77430; Chantler R087667). Gemma Aellah's PhD research was funded by Geissler’s Leverhulme Trust Research Leadership Award, and a small grant from the British Institute of East Africa. The editorial work and the open access publication of the book were supported by the Wellcome Trust (098492/Z/12/Z).

Supported by wellcometusi The Leverhulme Trust

CONTENTS Finding your way around the book 10 INTRODUCTION 13 PART ONE: TRAINING CASE STUDIES 16 Researcher-participant relationships 17 Is Fieldwork and friendship: working in your own community 21 2. Soap and persuasion: recruiting and caring for participants 24 3: Gel and/or condoms: safety in a microbicide trial 28 4. Friends like how?: getting personally involved with participants 33 5. Readability and sweet talk: the translation and comprehension of study documents 37 6. We don’t pay: ‘bus fares’ and other gifts in research 42 7. Your friend has nice clothes: confidentiality and staff identity in HIV home follow-up 47 8. Truth and lies: doing fieldwork in your own community 52 9. | could be a sex worker: meanings of exclusion and inclusion criteria to participants 57 10. They just come and ask questions: participants’ understanding of the purpose of research 63 11. Responsibility for what and whom?: end-of-trial and long-term healthcare 66 12. Hunger is not our mandate: dealing with poverty among research participants 71 13. They just want to sign quickly: different interpretations of informed consent 75 14. Martha's dilemma: foreign medical research as public good or exploitation? 81 155 Routine healthcare: whose obligation? 85 Community and family relationships 89 16. Everybody's corrupt: understanding suspicion in medical research 92 17. Bad press: the origins and impact of ‘blood stealing’ rumours 98 18. People will always talk: protecting participants from stigma in an HIV study 102 19. Lost in translation: public communication and power relations 106

Contents

20. Husband out of town: gender relations and decision-making 111 21. Chop your money!: challenges in recruitment and enforcing

study rules 116 22. My husband doesn’t know: involving male partners in microbicide

research 120 23. Of course we speak English: community engagement and

Introduction

INTRODUCTION

REGULATORY VERSUS RELATIONAL ETHICS

Global health research is not just about blood samples, laboratory technologies, data capture and translating evidence into health policy. It is about people. More specifically it is about relationships between people. It is the relationships between funders, government staff, local and international scientists, fieldworkers, research participants and communities, which facilitate the conduct of essential health RESEARCH IS ABOUT PEOPLE research. A concern with ‘relational ethics’, simply put, means thinking carefully about these relationships.

It also means thinking beyond and outside of the wealth of regulations which have sprung up in the field of transnational medical research. Relational ethics are the complex and spontaneous momentary pursuit of morally right actions in personal interactions with other humans.

They are guided not so much by formal rules as by individual and social conscience, and by particular overlapping identities and relationships. Good clinical practice guidelines will tell you what you need to include in a participant information sheet for a research study. But they won't help you think through what to do, for example, if members of your team are labelled ‘Satanists’ by the community, if a participant says her child is hungry during a research appointment, or if one colleague makes a derogatory comment about another because of their gender, faith or ethnicity.

Guidelines and regulations do not account for the ‘messiness’ of everyday encounters involved in global research practices.

RESEARCH IS ABOUT RELATIONSHIPS

SATANISTS AT WORK

INTRODUCTION

ANTHROPOLOGY AND RELATIONAL ETHICS

Anthropologists, on the other hand, have made the messiness of life their subject of enquiry. Anthropology is the study of human behaviour and human relationships. Anthropologists learn about this by spending long periods of time living in, and observing, different communities around the world. In our case, these were the communities of people involved in medical research in Africa.

For the past decade we have been involved in, and conducted studies on, transnational medical research in different parts of Africa, in many E g >. Sen, ae cases at long-established, large-scale research sites. Our aim OCR

is to explore how medical research works in practice, and what ideas and hopes actors pursue through their work in their relations with others.

RESEARCHING RESEARCH

To collect data on ‘relational ethics’, we shadowed fieldworkers, sat in on senior staff meetings, and lived in the

homes of research participants. We paid close attention to ee ee mundane practices and tacit knowledge, as well as hidden THEIR LIVES

tensions, subtle cues, and complex moralities. We did this

over long periods of time so that we could understand individual encounters and incidents in their wider contexts. At the same time, we also engaged ourselves in research collaborations, sought our informants’ consent, underwent ethical review and faced ethical dilemmas — much in the same way as our colleagues in the medical sciences do. We tried to learn from the ethical reflections that arose from our own research too and, needless to say, we more often than not failed to achieve definite, satisfactory solutions to the challenges that, ultimately, stem from the unjust distribution of wealth between the world’s peoples, as well as between academic and scholarly institutions.

During this process, we gathered many stories - some we were part of, others we followed as they unfolded, or were about told by colleagues. These stories have been fictionalized for the training case studies, but they are not hypothetical. They represent live encounters between researchers, participants and communities, and they show that ethics in medical research is complex and fluid, involving more than regulations and rules. Personal, cultural, professional, and community moralities and perspectives are all brought into play in specific contexts and situations.

INTRODUCTION

RELATIONAL ETHICS AND INEQUALITY IN AFRICA

Reflecting on relational ethics is important in any medical research context, but particularly crucial in Africa where global health research invariably involves major economic and political inequalities. The vast majority of health research conducted in Africa involves partnerships between countries, populations, institutions and staff from the global ‘North’ (the former European colonial powers and their North American

INEQUALITIES ARE SOMETIMES successors), and their counterparts in the global ‘South’ HIGHLY VISIBLE IN: RESEARCH (roughly speaking the formerly colonized areas of the globe). This means medical research in Africa operates across huge differentials in power, resources, and knowledge. Both the current reality of these differences, and historical memories of colonial relationships and post-colonial attempts at redress, affect how people involved in research today relate to each other. We found that these differences were an underlying theme to many of the ethical dilemmas we describe in this teaching resource. With this in mind we encourage both facilitators and training participants to read and engage with the material presented in the second half of this book which explores the current and historical context of transnational medical research and ethics in Africa in more depth.

Such things are often hard to talk about. Being explicit about inequality - and its many small practical effects - can be embarrassing, even humiliating. It can also highlight irresolvable differences in opinion, and therefore seem futile. This is Ad Ye why this workbook uses stories, rather than real cases. It is á our hope that discussing the stories will give global health researchers the opportunity to think about how they manage dilemmas and uncomfortable research encounters across power divides.

Our aim is to create a training tool which can begin to fill nE gap Bewegen ethics guidelines one their irate Grom ae ake implementation. The stories are designed to encourage DIFFERENCE BETWEEN THE GOVERNMENT practical thinking within constrained conditions, in order to CLINIC AND THE RESEARCH CLINIC improve the immediate conduct of medical research. But, at the same time we aim to raise awareness of the underlying, more challenging, issue of global inequality and how it affects global health research. The case studies are set up to encourage ethical deliberations on the stories to move between three distinct arenas of debate and action: debate over individual choices and behaviour, debate over institutional practices, and debate over wider ‘structural’ issues. An awareness of all three of these ‘levels’ operating in global medical research is, in our view, essential for all involved to move forward with a wider and more empowered understanding of ethical dilemmas.