The Ethics and Politics of Community Engagement in Global Health Research

Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader 'background conditions' of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Lindsey Reynolds is Co-Director of the Pivot Collective in Cape Town, South Africa. She also holds honorary appointments at Brown University, Stellenbosch University, and the University of Cape Town. Her work explores the ethical and social dynamics of processes of knowledge production and circulation in global health research and implementation. Salla Sariola is a Finnish Academy Research Fellow and an Adjunct Professor in Sociology at Helsinki University. Her work has explored the ethics and politics of science and technology, as well as gender and sexuality in South Asia and Africa. Her background encompasses science and technology studies, social study of biomedicine, and bioethics.

1. Introduction: The ethics and politics of community engagement in global health research 2. An alternative imaginary of community engagement: state, cancer biotechnology and the ethos of primary healthcare in Cuba 3. Who is 'in' and who is 'out'? Participation of older persons in health research and the interplay between capital, habitus and field 4. Engaging religious leaders to support HIV prevention and care for gays, bisexual men, and other men who have sex with men in coastal Kenya 5. Turning the gaze: challenges of involving biomedical researchers in community engagement with research in Patan, Nepal 6. Speaking for others: ethical and political dilemmas of research in global health 7. Who is answerable to whom? Exploring the complex relationship between researchers, community and Community Advisory Board (CAB) members in two research studies in Zambia 8. Empathic response and no need for perfection: reflections on harm reduction engagement in South Africa 9. Community engagement in an economy of harms: reflections from an LGBTI-rights NGO in Malawi 10. Emerging dynamics of evidence and trust in online user-to-user engagement: the case of 'unproven' stem cell therapies 11. The possibility of addressing epistemic injustice through engaged research practice: reflections on a menstruation related critical health education project in South Africa