Volume 9, Issue 2, June 2014, Pages 194-217
a
Centre de sociologie de l'innovation, Mines-ParisTech, Paris, France
b Department of Social Science, Health and Medicine, King's College London, London, United Kingdom
c Centre for Social Studies, University of Coimbra, Coimbra, Portugal
b Department of Social Science, Health and Medicine, King's College London, London, United Kingdom
c Centre for Social Studies, University of Coimbra, Coimbra, Portugal
Abstract
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. © 2014 Macmillan Publishers
Ltd.
Author keywords
biomedical research; France; patients' organisations'; politics of singularisation; Portugal; rare diseases
ISSN: 17458552Source Type: Journal
Original language: English
DOI: 10.1057/biosoc.2014.4Document Type: Article
Publisher: Palgrave Macmillan Ltd.
Rabeharisoa, V.; Centre de sociologie de l'innovation, Mines-ParisTech, Paris, France; email:vololona.rabeharisoa@mines-paristech.fr
© Copyright 2014 Elsevier B.V., All rights reserved.
© Copyright 2014 Elsevier B.V., All rights reserved.
