The Ethics and Politics of Community Engagement in Global Health Research / Edition 1

by Lindsey Reynolds, Salla Sariola

Overview

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.

Product Details

ISBN-13:	9780367437770
Publisher:	Taylor & Francis
Publication date:	03/17/2020
Pages:	136
Product dimensions:	6.88(w) x 9.69(h) x (d)

About the Author

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.

Table of Contents

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

Editorial Reviews

Reviewer: Donal O'Mathuna, PhD, MA (The Ohio State University College of Nursing)
Description: This book provides descriptions of several community engagement projects undertaken in global health contexts. The situations ranged from engagement of patients in Cuban cancer trials, religious leaders in Kenyan HIV prevention programs, IV drug users in South Africa, the elderly in the Dutch National Program of Elderly Care, to Community Advisory Boards (CABs) in Zambia and arts projects in Nepal.
Purpose: This book describes several community engagement activities undertaken within global health research in various low-income countries. Given the value ascribed to community engagement, this is an important objective. The authors achieve their purpose through providing clear descriptions of various projects and transparent evaluations of their successes and failures.
Audience: This book is written for researchers working in global health. It provides important practical guidelines for researchers, especially those working in low-income settings. The authors provide many practical insights given their experience as global health researchers.
Features: The 11 chapters start from the premise that community engagement is now widely accepted as intrinsically good because of its potential to promote democratic decision-making, empowerment of people, and improved legitimacy for various policies, procedures, and research. Since the beginning of this century, various approaches to community engagement have been implemented. These include patient councils, in-person and online group discussions, peer education programs, CABs, and community membership of ethics committees or funding agency boards. Global health and medical research have the potential to exploit communities and participants, with community engagement seen as an important strategy to reduce such risks. Each chapter in this volume describes strategies adopted as part of their community engagement activity. The authors are open about successes as well as failures and challenges. Examples of tokenistic engagement are discussed, as well as situations where accountability is unbalanced. Power dynamics are frequently discussed, especially when researchers view community engagement as primarily serving instrumental purposes, such as access to populations or higher recruitment. Selection of participants is regularly discussed as particularly challenging since all criteria lead to the exclusion of some community members no matter what approach is taken. Some of the recommendations to improve community engagement include the need to train and empower target communities to help them engage effectively with researchers, explaining that participation in community engagement can be time-consuming, addressing unrealistic expectations openly, using different methods of community engagement in the same project, giving communities opportunities to shape research projects, and improving transparency. The chapter on IV drug users in South Africa recommends greater attention to the values and ethos of how community engagement is conducted. Participants reported being treated like people who mattered by researchers who cared, and that this had more to do with an empathic response to community needs rather than any practical items provided. The engagement procedures helped to build a sense of community among participants when their input was heard and valued. In this way, community engagement activities have the potential to transcend instrumental purposes, provided they are conducted in ways that truly value community input.
Assessment: The book provides a rich collection of community engagement strategies conducted in various global health settings. The authors transparently discuss the strengths and weaknesses identified in the cases discussed. This volume would be valuable reading for any global health researcher prior to commencing a research project or community engagement strategy.

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