Title The public shaping of medical research : patient associations, health movements and biomedicine / edited by Peter Wehling, Willy Viehöver, and Sophia Koenen

Published London : Routledge/Taylor & Francis Group, 2015

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Description 1 online resource (xviii, 290 pages) : illustrations Series Routledge studies in the sociology of health and illness Routledge studies in the sociology of health and illness. Contents Patient associations, health social movements and the public shaping of biomedical research: an introduction -- Part I: Empirical cases and theoretical perspectives. 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 -- Initiating and funding medical research on a rare disease : the approach of the German Cystic Fibrosis Association / Andreas Reimann -- Eurordis : empowering patients living with rare diseases to participate in biomedical knowledge production / Christel Nourissier, Monica Ensini and Maria Mavris -- The entanglement of scientific and political claims : towards a new form of patients' activism / Madeleine Akrich, Orla O'Donovan and Vololona Rabeharisoa -- 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 II: Shifting contexts and new challenges. Autism, the Internet and medicalization / Peter Conrad and Catherine Tan -- A community fractured : Canada's breast cancer movement, pharmaceutical company funding, and science-related advocacy / Sharon Batt -- Beyond scientific controversies : scientific counterpublics, countervailing industries, and undone science / David J. Hess -- Interpellating patients as future users of biomedical technologies : the case of patient associations and stem cell research / Henriette Langstrup -- Patient organizations as biosocial communities? : conceptual clarifications and critical remarks / Thomas Lemke -- Part III: Democratizing biomedicine? The role of patient associations and health social movements. Changing contexts for science and society interaction : from deficit to dialogue, from dialogue to participation- and beyond? / Massimiano Bucchi -- The virtues (and some perils) of activist participation : the political and epistemic legitimacy of patient activism / Peter Wehling and Willy Viehöver -- The ethical legitimacy of patient organizations' involvement in politics and knowledge production : epistemic justice as a conceptual basis / Silke Schicktanz -- Conclusion : effects of and challenges to the public shaping of medical research / Willy Viehöver, Peter Wehling and Matthias Roche Summary 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 fibromyalg Bibliography Includes bibliographical references and index Notes English Online resource; title from resource home page (ebrary, viewed November 24, 2015) Subject Medicine -- Research. Biology -- Research. Public opinion. Patient advocacy. Patient participation. Biomedical Research Public Opinion Patient Participation Patient Advocacy HEALTH & FITNESS -- Holism. HEALTH & FITNESS -- Reference. MEDICAL -- Alternative Medicine. MEDICAL -- Atlases. MEDICAL -- Essays. MEDICAL -- Family & General Practice. MEDICAL -- Holistic Medicine. MEDICAL -- Osteopathy. Biology -- Research Medicine -- Research Patient advocacy Patient participation Public opinion Biomedizin Bürgerbeteiligung Forschung Medizinsoziologie Meinungsbildung Patient Politische Willensbildung Soziale Bewegung Form Electronic book Author Wehling, Peter, 1954- editor. Viehöver, Willy, editor. Koenen, Sophia, editor. ISBN 9781317584476 1317584473 9781315741871 1315741873 9781317584452 1317584457 9781317584469 1317584465 0367341417 9780367341411

Other Titles Patient associations, health movements and biomedicine

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