Transgender and gender diverse (TGD) individuals’ depsychopathologization in the eleventh revision of the International Classification of Diseases (ICD-11) faces systemic discriminations built-in epistemic pipelines. Based on an analysis of unexploited data from ICD-11 and the French translation process, this article addresses power issues in participatory research and systemic discrimination within a socio-cultural context. We used a peer-driven participatory approach to conduct qualitative analyses of the French version of the ICD based on contributions from 72 TGD participants in the French study for ICD-11. The results highlight a major incongruence between participants’ propositions and the final official translation. Alternative terms were proposed and discussed by participants in regard to usage and concepts, but also encompassed participation and perceived futility of maintaining pathologization. We found discrepancies in the French publication and translation processes, respectively on gender categorization and back translation. These results question the relevance and implementation of ICD-11 for TGD communities and highlight failures at all three stages of the official French translation. Power issues have an impact on knowledge production and, while mechanisms vary, all relate to epistemic injustice. Involving TGD communities in all stages of medical knowledge production processes would reduce transphobic biases. Individuals with personal stakes involved in politicized research areas appear all the more necessary today.

Depsychopathologization of transgender and gender diverse (TGD) individuals in the eleventh revision of the International Classification of Diseases (ICD-11) called for a shift in care delivery models, based on free and informed consent. Public health policies face epistemic and discriminatory challenges and consensus built on evidence-based data is needed. TGD communities were consulted but did not actively participate in ICD-11 and the following public health debates. There is a need for TGD perspective—both in research and practice. This study draws on a peer-led participatory approach and explores TGD participants’ recommendations based on unexploited French data from ICD-11, in which 72 TGD gave feedback on public policies. Lexicometric analyses were conducted using the ALCESTE method and resulted in a two-step double Descending Hierarchical Classification. Sex, gender, and health consumption were analyzed as secondary variables. The first classification highlighted five main topics: care pathways, training of professionals, access, literacy, and civil status change, developed into 12 targets in the second classification. While sex and gender appeared to have little impact on discourses, recommendations varied according to received care. This study supports the growing scientific consensus of a public health approach to face TGD health challenges and emphasizes TGD individuals’ expertise.

Introduction : Les personnes transgenres et de genre divers (TGD) représentent une part importante et croissante de la population générale qui fait face à des barrières individuelles et systémiques d’accès aux soins. Le contexte socioculturel et la mauvaise organisation des soins les placent dans une situation de vulnérabilité et il s’avère nécessaire de développer des stratégies de promotion de la santé durables. But de l’étude : L’objectif de cette étude participative est de dresser un état des lieux des freins et leviers d’action en faveur de la promotion de la santé des personnes TGD. Pour cela, elle s’appuie sur l’expertise des associations et vise à produire une synthèse thématique qui viendra soutenir la prise de décision politique. Résultats : Nous avons centralisé les ressources de 18 associations françaises et européennes et avons inclus 25 documents éligibles suite à une analyse de leur qualité ; 3 047 données ont été extraites et codifiées, puis développées en cinq thèmes qui ont permis de modéliser les actions, freins et leviers pour améliorer les parcours de soins des personnes TGD. Conclusions : La promotion de la santé des personnes TGD s’intéresse aux discriminations, aux parcours de soins, à l’accès aux soins, à la transmission des savoirs et à la recherche. Les principaux freins sont le rôle des médecins spécialistes, la pathologisation, l’injustice épistémique et la faible priorité politique des enjeux de santé des personnes TGD. Les principaux leviers d’action seront d’assurer une prise de décision permettant la mise en place d’une politique de santé pragmatique et collaborative dans ce contexte.