Early Genital Surgery in Disorders/Differences of Sex Development: Patients’ Perspectives

Abstract Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence patient preference is needed to inform decision-making. We conducted multicentre survey by cross-sectional questionnaire 14 specialized clinics six European countries. The sample comprised 459 individuals (≥ 16 years) with DSD diagnosis, including congenital adrenal hyperplasia (CAH) ( n = 192), XY prenatal androgen effect (A) 150), and without (nA) 117). Main outcome measures were level agreement given statements regarding surgery, clitoris reduction, vaginoplasty, hypospadias repair. A total 66% CAH 60% those DSD-A thought that infancy or the appropriate age surgery. Females divided this issue tended prefer vaginoplasty at later (XY 39%, DSD-nA 32%). 47% males preferred early Only 12% (CAH), 11% DSD-A), 21% DSD-nA) they would have been better off any adolescence. Individuals who had more likely approve it. Outcome data failed support general Participant perspectives varied considerably diagnostic category, gender, history contact groups. Case-by-case decision-making suited grasping ethical complexity issues stake. Trial registration : German Clinical Trials Register DRKS00006072.