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

Trial registration: German Clinical Trials Register DRKS00006072.

关于因性发育障碍/差异（DSD）而暂停儿童期选择性生殖器手术的提议仍在继续存在争议。需要有关患者偏好的经验证据来为决策提供信息。我们通过横断面问卷在 6 个欧洲国家的 14 家专科诊所进行了多中心调查。样本包括 459 名 DSD 诊断个体（≥ 16 岁），包括患有先天性肾上腺增生 (CAH) 的个体 ( n  = 192)、具有产前雄激素效应的 XY DSD (A) ( n  = 150) 和不具有产前雄激素效应的个体 (nA) （n  = 117）。主要结果指标是与有关生殖器手术（包括阴蒂缩小术、阴道成形术和尿道下裂修复术）的特定陈述的一致程度。共有 66% 的 CAH 患者和 60% 的 XY DSD-A 患者认为婴儿期或儿童期是生殖器手术的合适年龄。患有 XY DSD 的女性在这个问题上存在分歧，并且倾向于选择较晚年龄进行阴道成形术（XY DSD-A 39%，XY DSD-nA 32%）。共有 47% 的男性倾向于早期尿道下裂手术。只有 12% (CAH)、11% (XY DSD-A) 和 21% (XY DSD-nA) 认为如果在儿童期或青春期不接受任何手术，他们的生活会更好。早期接受生殖器手术的人更有可能赞同它。结果数据未能支持全面暂停早期选择性生殖器手术。参与者的观点因诊断类别、性别、手术史以及与支持团体的联系而有很大差异。个案决策更适合把握所涉问题的道德复杂性。

试验注册：德国临床试验注册中心 DRKS00006072。