Abstract
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.
Highlights
MethodControversy continues over elective surgery in childhood for disorders/differences of sex development (DSD) (Carmack, Notini, & Earp, 2016; Hughes, Houk, Ahmed, Lee, & LWPES/ ESPE Consensus Group, 2006; Lee et al, 2016; Mouriquand et al, 2016)
A total of 415 participants answered the question “When do you think is the appropriate time for genital surgery?” Altogether, 27 (6.5%) participants stated that adulthood was the right age for such a procedure
Within the XY DSD-A group, there was an association between responses and gender (p = .007; Fig. 2b), since 44% of males preferred infancy and 31% childhood over other stages of life, whereas females slightly preferred adolescence (31%) over infancy (26%) and childhood (19%)
Summary
MethodControversy continues over elective surgery in childhood for disorders/differences of sex development (DSD) (Carmack, Notini, & Earp, 2016; Hughes, Houk, Ahmed, Lee, & LWPES/ ESPE Consensus Group, 2006; Lee et al, 2016; Mouriquand et al, 2016). Surgery that is “cosmetic rather than vital for health” and, considered “medically unnecessary” should be postponed until the age of informed consent. Major political institutions, such as the European Parliament, the Council of Europe, Commissioner for Human Rights, and the Special Rapporteur of the United Nations on torture and other cruel, inhuman or degrading treatment or punishment, have recently adopted this position (Council of Europe, Commissioner for Human Rights, 2015; European Parliament, 2013; Human Rights Council, 2013). Given the political weight of the moratorium advocates, an outright ban on “normalizing” early surgery may be implemented into national laws sooner or later. The question arises whether substantial evidence on patients’ perspectives is available to support such a significant change in medical practice
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