From ‘politics of numbers’ to ‘politics of singularisation’: Patients’ activism and engagement in research on rare diseases in France and Portugal
| Autor: | Michel Callon, João Arriscado Nunes, Vololona Rabeharisoa, Florence Paterson, AM Filipe, Frédéric Vergnaud |
|---|---|
| Přispěvatelé: | Centre de Sociologie de l'Innovation i3 (CSI i3), MINES ParisTech - École nationale supérieure des mines de Paris, Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL)-Centre National de la Recherche Scientifique (CNRS), CES - Center for Social Studies, University of Coimbra [Portugal] (UC), European Project: 230307,EC:FP7:SiS,FP7-SCIENCE-IN-SOCIETY-2008-1,EPOKS(2009), Mines Paris - PSL (École nationale supérieure des mines de Paris), Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL)-Institut interdisciplinaire de l’innovation (I3), Centre National de la Recherche Scientifique (CNRS)-Centre National de la Recherche Scientifique (CNRS), Centre National de la Recherche Scientifique (CNRS)-MINES ParisTech - École nationale supérieure des mines de Paris, Université Paris sciences et lettres (PSL)-Université Paris sciences et lettres (PSL) |
| Rok vydání: | 2014 |
| Předmět: |
medicine.medical_specialty
Health (social science) media_common.quotation_subject Medical tourism 050905 science studies 03 medical and health sciences Politics 0302 clinical medicine patients' organisations' medicine 030212 general & internal medicine Dopamine hypothesis of schizophrenia media_common [SHS.SOCIO]Humanities and Social Sciences/Sociology Equity (economics) Portugal Constitution Health Policy Public health 05 social sciences patients' organisations rare diseases Gender studies 16. Peace & justice Making-of 3. Good health Diathesis–stress model biomedical research politics of singularisation France 0509 other social sciences Psychology |
| Zdroj: | BioSocieties BioSocieties, Palgrave Macmillan, 2014, pp.24. ⟨10.1057/biosoc.2014.4⟩ BioSocieties, 2014, advance online publication, March 31, 2014, pp.24. ⟨10.1057/biosoc.2014.4⟩ |
| ISSN: | 1745-8560 1745-8552 |
| DOI: | 10.1057/biosoc.2014.4 |
| Popis: | International audience; This article investigates how the engagement of patients' organisations (POs) in research relates to the dynamics of their activism in the area of rare diseases. It traces back how certain concerned families and groups elaborated rareness as an issue of equity and social justice, gave shape to what we call a 'politics of numbers' for stating the fact of rare diseases as a major public health problem, and promoted patients' critical involvement in biomedical and therapeutic research as a solution for mainstreaming rare diseases in regular health systems. It then studies three Portuguese and three French POs, which point to the limits of the epidemiological notion of rareness for capturing the compounded and intersecting nature of the bio-psycho-social make-up of their conditions. It finally shows how these critics progressively lead to the emergence of an alternative politics, which we call a 'politics of singularisation'. At the core of this politics stands a collective and ongoing profiling of conditions and patients, whose similarities and differences relates to the ubiquity of biological pathways and diseases categories. Our contention is that this 'politics of singularisation' not only pictures a politics of illnesses which questions the rationale for nosological classifications, but also, and consequently, affects the making of social links by suggesting the simultaneous identification of individual patients and constitution of collectives to which they partake while asserting their specificities. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|
Full text from SpringerLink