The past decade has seen a significant shift in the clinical landscape of management of Differences of Sex Development (DSD). Gonadectomy, particularly in the paediatric age group, is one of the more potentially contentious surgical interventions that may be considered for a given individual. Historically, prophylactic gonadectomy has been recommended for a number of underlying variations due to an increased risk of malignant change in dysgenetic or intra-abdominal gonads; its consideration was also advocated where sex of rearing differs from biological sex in some 46XY DSD. In recent years, new information gleaned from both lived experience as well as improved genetic diagnoses has called these criteria into question and uncertainties as to the need for and optimal timing of gonadectomy remain for many DSD. In tandem with this, intersex advocacy groups and human rights agencies have been increasingly vocal in their criticism of many surgical interventions in children too young to give their own consent.
Assessing what is ‘medically necessary’ and ethically appropriate for an individual at a given timepoint can be difficult. At the Royal Children’s Hospital Melbourne, complex management decisions for children and adolescents with DSD are made following multiple clinical reviews and multidisciplinary team discussion. This presentation will review our MDT clinical approach and decision-making process in relation to gonadectomy, with reference to clinical cases to highlight the clinical and ethical challenges involved. Trends in gonadectomy for children with DSD at our institution in recent years and the uncertainties and unknowns relating to both conservative management and active intervention for different variations will also be discussed.