Abstract The European Reference Network on Rare Endocrine Conditions (Endo-ERN) needs to take a cautious and evidence-based position regarding needs for genital surgery in individuals with Differences in Sex Development (DSD). Given the multi-ERN coverage of DSD, the focus of our network is on rare endocrine care concerns in such surgeries and ensuring Endo-ERN's position aligns with the broader European emphasis on human rights, ethical medical practices, and patient-centred care. This discussion paper addresses the ethical, medical, and legal considerations surrounding genital surgery in individuals with DSD conditions in Europe. It advocates for a shift towards patient-centred care that prioritizes the rights and well-being of individuals with DSD conditions, particularly infants and children. The recommendations emphasize deferring non-urgent surgeries with irreversible effects until the individual can provide informed consent whenever possible, strengthening support systems for families, and promoting a standardized European framework that respects human rights, with clearly defined quality indicators and multidisciplinary care.
Grinten et al. (Wed,) studied this question.