Ethics in Participatory Research for Health and Social Well-Being
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.
This 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.
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.
First published 2019
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British Library Cataloguing-in-Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Names: Banks, Sarah, editor. | Brydon-Miller, Mary, editor.Title: Ethics in participatory research for
health and social well-being : cases and commentaries / edited by Sarah Banks and Mary Brydon-
Miller.Description: Abingdon, Oxon ; New York, NY : Routledge, 2018. | Includes bibliographical
references and index.Identifiers: LCCN 2018013419| ISBN 9781138093416 (hbk) | ISBN
9781138093430 (pbk) | ISBN 9781315106847 (ebk)Subjects: | MESH: Biomedical Research--ethics
| Community-Based Participatory Research--ethics | Ethics, Research | Principle-Based Ethics
| Human Rights | Case ReportsClassification: LCC R724 | NLM W 20.55.E7 | DDC 174.2--
dc23LC record available at https://lccn.loc.gov/2018013419
ISBN: 978-1-138-09341-6 (hbk)
ISBN: 978-1-138-09343-0 (pbk)
ISBN: 978-1-315-10684-7 (ebk)
Typeset in Bembo
by Servis Filmsetting Ltd, Stockport, Cheshire
Table of Contents
Sarah Banks and Mary Brydon-Miller
Barbara Groot and Tineke Abma, with cases contributed by Annette Bilfeldt, Jackie Robinson, Jenevieve Mannell and Candice Satchwell, and additional commentaries by Melanie Peterman and Ruud van Zuijlen
Barbara Groot and Tineke Abma
, Annette Bilfeldt
, Barbara Groot, Melanie Peterman, Ruud van Zuijlen and Tineke Abma
, Jackie Robinson
, Barbara Groot, Melanie Peterman, Ruud van Zuijlen and Tineke Abma
Jenevieve Mannell
, Barbara Groot, Melanie Peterman, Ruud van Zuijlen and Tineke Abma
, Candice Satchwell
, Barbara Groot, Melanie Peterman, Ruud van Zuijlen and Tineke Abma
Barbara Groot and Tineke Abma
Anne MacFarlane and Brenda Roche, with cases contributed by Pinky Shabangu, Catherine Wilkinson, Mieke Cardol and Geralyn Hynes
Anne MacFarlane and Brenda Roche
, Pinky Shabangu
, Anne MacFarlane and Brenda Roche
, Catherine Wilkinson
, Anne MacFarlane and Brenda Roche
, Mieke Cardol
, Anne MacFarlane and Brenda Roche
, Geralyn Hynes
, Anne MacFarlane and Brenda Roche
Anne MacFarlane and Brenda Roche
Meghna Guhathakurta with cases contributed by Angela Contreras, Shaun Cleaver, Michael J. Kral, Monika Bjeloncikova and Vendula Gojova
Meghna Guhathakurta
, Angela Contreras
, Meghna Guhathakurta
, Shaun Cleaver
, Meghna Guhathakurta
, Michael J. Kral
, Meghna Guhathakurta
, Monika Bjeloncikova and Vendula Gojova
, Meghna Guhathakurta
Meghna Guhathakurta
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 by Truus Teunissen and Doortje Kal
Gustaaf Bos and Tineke Abma
, Kate York
, Tineke Abma, Truus Teunissen, Doortje Kal and Gustaaf Bos
, Sarah Marie Wiebe
, Tineke Abma, Truus Teunissen, Doortje Kal and Gustaaf Bos
, Aila-Leena Matthies
, Tineke Abma, Truus Teunissen, Doortje Kal and Gustaaf Bos
, Gustaaf Bos and Rafaella van den Bosch
, Tineke Abma, Truus Teunissen and Doortje Kal
Tineke Abma and Gustaaf Bos
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
Kristin Kalsem
, Alana Martin, Christine Lalonde, Lisa Boucher, Claire Kendall, and Zack Marshall
, Kristin Kalsem
, Sarah Switzer, Carol Strike, Adrian Guta, Soo Chan Carusone
, Kristin Kalsem
, Michelle Brear
, Kristin Kalsem
, Vu Song Ha
, Kristin Kalsem
Kristin Kalsem
Adrian Guta, with cases contributed by Colin Bradley, Anne MacFarlane, Jane Jervis, Geralyn Hynes, and Jon Fieldhouse
