[Medical decisions related to disorders of sex development: what new ethical issues?]

The medical treatment of children sometimes referred to as "intersex" has evolved over the last few decades. The bioethics law in 2021 in France sought to "depathologize" these situations by now referring to "variations in genital development" (disorders of sex development) and limiting treatment to "medical necessity" linked to unavoidable medical indications. Faced with this evolution, the clinical ethics center (AP-HP) conducted a qualitative study in three specialized departments (14 situations included, 38 semi-structured interviews with 17 parents and 13 professionals) and by observing 14 national meetings (new mechanism where medical decisions are made by "consensus"). The results show that people's ethical positions can be opposed, whether we think from a logic linked to the medical proposal (as is usual in pediatrics), or from a logic linked to the request of the person concerned (waiting for the "consent" of the individual concerned). More broadly, we are witnessing a re-examination of the role of medicine in relation to what it describes - or has long described - as functional disability, but also of the place of parents in pediatrics and the voice given to children or future adults in medical decisions that affect them. This paradigm shift requires a rethinking of the care pathway.