The Timing of Genital Surgery in Somatic Intersexuality: Surveys of Patients’ Preferences

Abstract

In recent years, intersex advocates, medical ethicists, and lawmakers have increasingly demanded a delay of genital surgery that is not acutely medically necessary in patients with somatic intersexuality to the age of consent. This study provides a review of published surveys of affected patients’ own opinions on this issue. In part with a search of PubMed 2000-2021, ten pertinent surveys of patients were identified: three from the U.S., four from European countries, and one each from Brazil, China, and Malaysia. All were based on samples of clinic patients, most of whom had previously undergone genital surgery. The majority of both XX and XY patients with somatic intersexuality favored early surgery, with somewhat more syndrome-specific variability in XY patients. The available survey data clearly indicate that a mandatory delay of genital surgery in all patients with somatic intersexuality to the age of consent would disregard the wishes of the majority of surveyed patients. A syndrome- and syndrome-severity-specific individualized approach to surgery decisions appears more appropriate.

Standards of Care for the Health of Transgender and Gender Diverse People, Version 8

“…Many may face the additional challenge presented by the awareness of the incongruence between their assigned gender and biological characteristics such as sexual karyotype, gonads, past and/or current sex-hormonal milieu, and reproductive tract configuration. This situation may also adversely affect the individuals’ mental health (Godfrey, 2021 ; Meyer-Bahlburg, 2022 ). A recent online study of a very large sample of LGBTQ youth indicated that LGBTQ youth who categorized themselves as having a physical intersex variation had a rate of mental health problems that was higher than the rate in LGBTQ youth without intersexuality (Trevor Project, 2021 ).…”

“…Some intersex specialists consider it potentially harmful to insist on a universal deferral of early genital surgery for genital variations without immediate medical risks. Reasons supporting this view include 1) intersex conditions are highly heterogeneous with respect to type and severity as well as associated gonadal structure, function, and malignancy risk; 2) societies and families vary tremendously in gender norms and intersex stigma potential; 3) early surgery may present certain technical advantages; and 4) a review of surveys of individuals with intersexuality (most of whom had previously undergone genital surgery) show the majority endorse surgery before the age of consent, especially in the case of individuals with 46,XX CAH and less strongly for individuals with XY intersex conditions (Meyer-Bahlburg, 2022 ). Experts supporting this view call for an individualized approach to decisions regarding genital surgery and its timing.…”

Recommendations for 46,XX Congenital Adrenal Hyperplasia Across Two Decades: Insights from the North American Differences of Sex Development Clinician Survey

“…A recent analysis of surveys of patients with DSD (including 46,XX CAH), concerning views on the timing of genital surgery, indicates that prohibiting genital surgery at a young age may not align with the preferences of a significant number of these patients (Meyer-Bahlburg, 2022 ). For instance, a survey of 14 DSD-specialized clinics in six European countries reported that 46% of the 173 participants with CAH believed that surgeries should be performed in infancy (before 6 months of age) and an additional 20% believed surgeries should be performed in childhood.…”

Intersex, DSD, and the Child’s Well-Being: Changing Perceptions

“…He summarizes the findings of 10 surveys addressing the question of whether adults with DSD conditions would favor genital surgery in early childhood versus later in adolescence or adulthood, when their personal informed consent is possible. In summary, the majority of participants in these surveys answered that they retrospectively approved early surgery [8]. What can be concluded from this?…”

“…Meyer-Bahlburg points out that through continuously improved surgical techniques and increased knowledge about the psychosexual development in different underlying diagnoses, a treatment regimen has been established which leads to a satisfactory result for the majority of those operated on as children. Since the surveys reviewed indicate a majority of individuals with DSD who have meanwhile reached adulthood retrospectively favor early surgery, he concludes that “a mandatory delay of genital surgery to the age of consent disregards the preference of such patients and, thereby, constitutes a violation of medical ethics” [8]. We believe that this warrants a broad and serious discussion since it may not be as clear as it seems.…”