ENDO-ERN expert opinion: addressing the endocrine needs in considering genital surgery in disorders/differences in sex development individuals in Europe

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-centered 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 toward patient-centered care that prioritizes the rights and well-being of individuals with DSD conditions, particularly infants and children. The recommendations emphasize deferring nonurgent 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.