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  1. Illness Online: Self-reported Data and Questions of Trust in Medical and Social Research.Sally Wyatt, Anna Harris, Samantha Adams & Susan E. Kelly - 2013 - Theory, Culture and Society 30 (4):131-150.
    Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing (...)
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  • The “technoscientization” of medicine and its limits: technoscientific identities, biosocialities, and rare disease patient organizations.Peter Wehling - 2011 - Poiesis and Praxis 8 (2-3):67-82.
    The fact that the emergence of “technoscience,” resulting from the coalescing of science and technology, may have serious social and cultural impact has been debated in recent years particularly with regard to the field of medicine. The present article is exploring the scope and limits of the “technoscientization” of medicine using the example of rare disease patient associations. It is investigated whether and to what extent these organizations adopt technoscientific illness identities and subscribe to the research priorities and objectives of (...)
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  • Exploring the Positions of German and Israeli Patient Organizations in the Bioethical Context of End-of-Life Policies.Aviad Raz, Isabella Jordan & Silke Schicktanz - 2014 - Health Care Analysis 22 (2):143-159.
    Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...)
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  • Moving Evidence: Patients’ Groups, Biomedical Research, and Affects.Lisa Lindén - 2021 - Science, Technology, and Human Values 46 (4):815-838.
    Research in science and technology studies has analyzed how patients’ groups engage in practices that connect biomedicine and patient experience in order to become involved in the shaping of biomedical research. However, there has been limited attention to the affective dimensions of such practices. Based on ethnographic fieldwork with a gynecological cancer patients’ group in Sweden, this article focuses on practices that aim to influence researchers and research institutions to prioritize biomedical gynecological cancer research. It analyzes how “affects” are woven (...)
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