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La dynamique des victimes. Les formes d’engagement associatif face aux contaminations iatrogènes (VIH et prion)

Abstract : This paper aims to offer a contribution to the study of changes in the forms of engagement of patients’ associations in relation to the world of medicine. Two different dynamics have so far been documented in social studies research concerning rare diseases and AIDS in particular : the dynamics of the excluded and the dynamics of minorities. The paper examines a third form of dynamics, whereby patients’ associations reevaluate their relationships with the distribution of powers and skills within the medical profession, and reconfigure their forms of engagement. This is the dynamics of victims -— persons affected by the health services over the last twenty years. The analysis is based on comparison of two cases of iatrogenic contamination (HIV and prion) that revealed notorious breakdowns in the recent history of public health in France : the contaminated blood case and the growth hormone case. The paper examines the tensions which arose following the revelation of these contaminations and which marked the various associations that had been formed around hemophilia and growth problems in a cooperative relationship with the medical sector. It analyses first of all how these tensions led to the emergence of victims’ rights groups seeking compensation and, secondly, how these groups forced the Association française des hémophiles and GRANDIR to change their position as regards the case, the medical world and treatment-related risk.
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Submitted on : Monday, December 13, 2021 - 12:02:34 PM
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Janine Barbot, Emmanuelle Fillion. La dynamique des victimes. Les formes d’engagement associatif face aux contaminations iatrogènes (VIH et prion). Sociologie et Sociétés, 2007, 39 (1), pp.217-247. ⟨10.7202/016940ar⟩. ⟨hal-03477064⟩



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