Intersex Stigma and Discrimination: Effects on Patient-Centred Care and Medical Communication

Discrimination: abstract Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care (PCC) and Shared Decision Making (SDM) approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC and SDM and its effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context. Résumé Abstract Les personnes présentant des variations intersexuelles se situent en dehors du binaire sexuel normatif homme/femme pour diverses raisons. Ces personnes sont fortement stigmatisées et discriminées dans les sphères juridiques, médicale et sociale. Dans cet article, nous analysons les manifestations de cette discrimination dans le contexte des soins de santé et nous émettons l’hypothèse que les approches de soins centrés sur le patient (SCP) et de prise de décision partagée (PDP) sont mal pratiquées avec les personnes intersexuées. Un examen narratif de la littérature actuelle permet de présenter les preuves d’une pratique inadéquate des SCP et de la PDP, ainsi que leurs répercussions sur les personnes intersexuées et, dans le contexte pédiatrique, sur leurs parents. La désinformation des parents de personnes intersexuées par les praticiens médicaux favorise la perpétuation d’interventions chirurgicales inutiles. Nous proposons des stratégies pour améliorer les soins médicaux aux personnes intersexuées, notamment une meilleure adhésion aux directives de la SCP et du PDP ainsi que la normalisation socioculturelle de l’identité intersexuée. Les perceptions actuelles des interventions chirurgicales pratiquées sur les nourrissons et les enfants intersexués doivent mieux correspondre aux risques pour la santé physique et psychologique fondés sur des preuves. Toutes ces stratégies s’inscrivent dans le cadre de la préservation de l’autonomie et de l’intégrité physique des personnes intersexuées et de la garantie que leur bien-être reste au cœur de leur prise en charge dans le contexte médical. Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care (PCC) and Shared Decision Making (SDM) approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC and SDM and its effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context.