Patient organizations and social health movements offer one of the most important and illuminating examples of civil society engagement and participation in scientific research and research politics. Influencing the research agenda, and initiating, funding and accelerating the development of diagnostic tools, effective therapies and appropriate health-care for their area of interest, they may champion alternative, sometimes controversial, programs or critique dominant medical paradigms. Some movements and organizations advocate for medical recognition of contested illnesses, as with fibromyalgia orADHD, while some attempt to "de-medicalize" others, such as obesity or autism.
Bringing together an international selection of leading scholars and representatives from patients' organizations, this comprehensive collection explores the interaction between civil society groups and biomedical science, technology development, and research politics. It takes stock of the key findings of the research conducted in the field over the past two decades and addresses emerging problems and future challenges concerning the interrelations between health movements and patient organisations on the one hand, and biomedical research and research policies on the other hand. Combining empirical case studies with conceptual discussion, the book discusses how public participation can contribute to, as well as restrict, the democratization of scientific knowledge production.
This volume is an important reference for academics and researchers with an interest in the sociology of health and illness, science and technology studies, the sociology of knowledge, medical ethics or healthcare management and research, as well as medical researchers and those involved with health-related civil society organizations.
Table of Contents
Introduction: Patient Associations, Health Social Movements and the Public Shaping of Biomedical Research: An Introduction Peter Wehling, Willy Viehöver and Sophia Koenen Part 1: Empirical Cases and Theoretical Perspectives 1. A Seat at the Table, "a Lab of Our Own" and Working with What We Know Now: How the U.S. Environmental Breast Cancer Movement Shapes Research Lori Baralt 2. Initiating and Funding Medical Research on a Rare Disease: The Approach of the German Cystic Fibrosis Association Andreas Reimann 3. EURORDIS: Empowering Patients Living with Rare Diseases to Participate in Biomedical Knowledge Production Christel Nourissier, Monica Ensini and Maria Mavris 4. The Entanglement of Scientific and Political Claims: Towards a New Form of Patients’ Activism Madeleine Akrich, Orla O’Donovan and Vololona Rabeharisoa 5. Obesity, the Alternative Food Movement, and Complete Streets: New Forms of ‘Patient’ Activism and the Evolution of Health Social Movements Mercedes C. Lyson and Stephen Zavestoski Part 2: Shifting Contexts and New Challenges 6. Autism, the Internet and Medicalization Peter Conrad and Catherine Tan 7. A Community Fractured: Canada’s Breast Cancer Movement, Pharmaceutical Company Funding, and Science-Related Advocacy Sharon Batt 8. Beyond Scientific Controversies: Scientific Counterpublics, Countervailing Industries, and Undone Science David J. Hess 9. Interpellating Patients as Future Users of Biomedical Technologies: The Case of Patient Associations and Stem Cell Research Henriette Langstrup 10. Patient Organizations as Biosocial Communities? Conceptual Clarifications and Critical Remarks Thomas Lemke Part 3: Democratizing Biomedicine? The Role of Patient Associations and Health Social Movements 11. Changing Contexts for Science and Society Interaction: From Deficit to Dialogue, from Dialogue to Participation- and beyond? Massimiano Bucchi 12. The Virtues (and Some Perils) of Activist Participation: The Political and Epistemic Legitimacy of Patient Activism Peter Wehling and Willy Viehöver 13. The Ethical Legitimacy of Patient Organizations’ Involvement in Politics and Knowledge Production: Epistemic Justice as a Conceptual Basis Silke Schicktanz 14. Conclusion: Effects of and Challenges to the Public Shaping of Medical Research Willy Viehöver, Peter Wehling and Matthias Roche
Peter Wehling currently is senior researcher at the Institute of Sociology at Goethe-University, Frankfurt/Main (Germany); until the end of 2013 he directed the research project "Participatory Governance of Science" at the University of Augsburg. His research interests include science and technology studies, sociology of knowledge and ignorance, sociology of health and illness, and sociological theory and critical sociology. Among his recent publications are: Entgrenzung der Medizin, co-edited with Willy Viehöver, Bielefeld 2011; Fighting a losing battle? The right not to know and the dynamics of biomedical knowledge production, in M. Gross and L. McGoey (eds) Routledge International Handbook of Ignorance Studies, London/New York, forthcoming
Willy Viehöver is a senior researcher at the University of Augsburg (Germany) and currently visiting professor at the Department of Sociology. His main research interests include discourse and narrative analysis, qualitative social research, sociology of health and illness, policy analysis, science and technology studies, sociology of knowledge, and sociological theory. His recent publications include: Governing the Planetary Greenhouse in Spite of Scientific Uncertainty, which appeared in Science, Technology & Innovation Studies, 6(2), in 2010, and: Zivilgesellschaft und Wissenschaft – Ein Spannungsfeld zwischen Konflikt und Kooperation, co-authored with Peter Wehling, which appeared in Sozialwissenschaften und Berufspraxis (SuB), 35(2), in 2010
Sophia Koenen is currently working at the Department of Medical Sociology at the University of Regensburg as a researcher and teacher of undergraduate studies. She is involved in an interdisciplinary project on the public communication of genetic risk factors of widespread diseases, specifically Age Related Macular Degeneration (AMD). Until the end of 2013, Sophia Koenen was part of the research project "Participatory Governance of Science" at the Institute of Sociology at Augsburg University. She successfully earned her Master of Arts at the University of Augsburg in March 2014. Her scientific interest focuses on qualitative research in sociology of health and illness
‘The Public Shaping of Medical Research is an interesting and thought-provoking book. Throughout, it is clear that patients and patient stories play a key role in shaping the biomedical landscape. What many of the chapters have successfully achieved is to represent the struggles of patient collectives in advancing medical knowledge and supporting the needs of their populations. These journeys involve success and failure, and choices about how to collaborate, with whom, and with what agenda…With its successful inclusion of a variety of voices, approaches, topics and methods, The Public Shaping of Medical Research will find an equally wide-ranging - and appreciative - audience.’ – New Genetics and Society
‘This is a highly readable and informative book, with strong themes developed in a wide range of theoretical and practical directions.’ – Sociology of Health and Illness