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INTRODUCTION

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.