000 02484cam a2200277 4500500
005 20250121143905.0
041 _afre
042 _adc
100 1 0 _aAegerter, Audrey
_eauthor
245 0 0 _aThe stakes and controversies of intersex activist participation in the Chicago Consensus (2005)
260 _c2023.
500 _a63
520 _aIntroduction: For the first time, two intersex activists were invited to participate in an international medical conference in Chicago in 2005. As a result of this conference, recommendations for the medical management of intersex patients were updated. In addition, a new terminology has been adopted to refer to intersex people, namely disorders of sex development. Purpose of research: This qualitative research aims to understand the implication of patient expertise in the development of new models of care. The article takes as a case study a controversy between the Intersex Society of North America (ISNA) and the Organisation internationale des intersexes (OII), during the 2000’s. Results: The analysis of the controversy between ISNA and OII reveals that the participation of patients in the Chicago conference raises the epistemic injustice. That is, the knowledge of those affected is not given the same credibility as that of other participants. In addition, intersex people do not have access to the same information as health professionals, especially since the medical protocols used to recommend secrecy. It also reveals that the strategies adopted by some organizations may prove to be a failure or safeguard positions contrary to the interests of the people concerned. This paper calls for reflection on the strategies implemented, here in the dialogue with the medical profession. Conclusions: This research contributes more widely to the scientific debates on the epistemological and political stakes of a participation of the concerned persons in the development of healthcare policies.
690 _aDisorders of sex development
690 _aIntersexe
690 _aMedical expertise
690 _aEpistemic injustice
690 _aLay expertise
690 _aDisorders of sex development
690 _aIntersexe
690 _aMedical expertise
690 _aEpistemic injustice
690 _aLay expertise
786 0 _nSanté Publique | 34 | HS2 | 2023-05-07 | p. 59-67 | 0995-3914
856 4 1 _uhttps://shs.cairn.info/journal-sante-publique-2022-HS2-page-59?lang=en&redirect-ssocas=7080
999 _c588210
_d588210