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Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives
Elena Bennecke1,2, Stephanie Bernstein3, Peter Lee4
1Department of Paediatric Endocrinology and Diabetology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.
Archives of Sexual Behavior
|March 13, 2021
Summary
Patient preferences on early genital surgery for disorders/differences of sex development (DSD) vary. Most with CAH and XY DSD-A favored early surgery, while females with XY DSD preferred later intervention, suggesting case-by-case decisions are best.
Area of Science:
- Medical Ethics
- Pediatric Surgery
- Endocrinology
Background:
- Elective genital surgery for disorders/differences of sex development (DSD) in childhood is controversial.
- Patient perspectives are crucial for informed decision-making regarding surgical interventions.
Purpose of the Study:
- To survey individuals with DSD regarding their preferences on childhood elective genital surgery.
- To gather empirical evidence to inform the debate on a potential moratorium for DSD-related surgeries.
Main Methods:
- A multicentre cross-sectional survey using questionnaires was conducted in 14 specialized clinics across six European countries.
- The study included 459 individuals (≥16 years) diagnosed with DSD, categorized into congenital adrenal hyperplasia (CAH), XY DSD with prenatal androgen effect (A), and without (nA).
- Participants reported their agreement levels on statements concerning clitoris reduction, vaginoplasty, and hypospadias repair.
Main Results:
- A majority of individuals with CAH (66%) and XY DSD-A (60%) supported early genital surgery in infancy or childhood.
- Females with XY DSD showed divided opinions, with a tendency towards later vaginoplasty (39% for XY DSD-A, 32% for XY DSD-nA).
- Early surgical intervention correlated with higher approval rates; only 11-21% felt they would have been better off without childhood/adolescent surgery.
Conclusions:
- Empirical data do not support a general moratorium on early elective genital surgery for DSD.
- Individual perspectives on DSD surgery differ significantly based on diagnosis, gender, surgical history, and support group engagement.
- A case-by-case approach is recommended to address the ethical complexities of DSD surgical decisions.
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