1st Edition
Ethics in Participatory Research for Health and Social Well-Being Cases and Commentaries
Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of ‘research informants’ do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges.
The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors.
Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers.
Chapter 1. Ethics in participatory research
Sarah Banks and Mary Brydon-Miller
Chapter 2. Partnership, collaboration and power
Barbara Groot and Tineke Abma, with cases contributed by Annette Bilfeldt, Jackie Robinson, Genevieve Mannell and Candice Satchwell, and additional commentaries by Melanie Peterman and Ruud van Zuijlen
Chapter 3. Blurring the boundaries between researcher and researched, academic and activist
Anne MacFarlane and Brenda Roche, with cases contributed by Pinky Shabangu, Catherine Wilkinson, Mieke Cardol and Geralyn Hynes
Chapter 4. Community rights, conflict and democratic representation
Meghna Guhathakurta with cases contributed by Angela Contreras, Shaun Cleaver, Michael J. Kral, Monika Bjeloncikova and Vendula Gojova
Chapter 5. Co-ownership, dissemination and impact
Gustaaf Bos and Tineke Abma, with cases contributed by Kate York, Sarah Marie Wiebe, Aila-Leena Matthies, Gustaaf Bos and Rafaella van den Bosch, and additional commentaries byTruus Teunissen and Doortje Kal
Chapter 6. Anonymity, privacy, and confidentiality
Kristin Kalsem with cases contributed by Alana Martin, Christine Lalonde, Lisa Boucher, Claire Kendall, Zack Marshall, Sarah Switzer, Carol Strike, Adrian Guta, Soo Chan Carusone, Michelle Brear, and Vu Song Ha
Chapter 7. Institutional ethical review processes
Adrian Guta, with cases contributed by Colin Bradley, Anne MacFarlane, Jane Jervis, Geralyn Hynes, and Jon Fieldhouse.
Chapter 8. Social action for social change
Erin Davis and Cathy Vaughan, with cases contributed by Saskia Duijs, Vivianne Baur, Raquel Ignacio, Philile Mbatha and Jasmin Chen
Biography
Sarah Banks is Professor of Applied Social Sciences, Department of Sociology and Co-director, Centre for Social Justice and Community Action, Durham University, UK.
Mary Brydon-Miller is Professor of Educational Leadership, Evaluation, and Organizational Development, College of Education and Human Development, University of Louisville, USA.
