ISSN 1662-4009 (Online)

ESPE Yearbook of Paediatric Endocrinology (2019) 16 6.10 | DOI: 10.1530/ey.16.6.10

Management of pediatric patients with DSD and ambiguous genitalia: Balancing the child’s moral claims to self-determination with parental values and preferences

Diamond DA, Swartz J, Tishelman A, Johnson J & Chan YM

J Pediatr Urol. 2018 Oct;14(5):416.e1–416.e5.

doi: 10.1016/j.jpurol.2018.04.029. PubMed ID: 29903608

This paper discusses the management of three DSD cases with difficult sex assignment at a US center. The goal of this report was to explore factors involved in parental decision making and the challenge to reconcile respect for the child’s integrity with parental rights to make decisions in what they believe is best for their child. The authors propose a team management approach, which carefully assesses risks and opportunities associated with either gender pathway and discusses with the parents the various treatment options. Pillars of such an approach are provision of full information, psychosocial support and time for parents to consider all the options.

For years now, early genital surgery has been intensely debated. However, so far there has not been convincing evidence that this has effectively resulted in medical practice changes. Although the authors do not take a stand against early genital surgery and the parents ultimately opted for intervention to make the genital appearance more in line with the gender of rearing, the report is convincing in demonstrating that transparency and support in the process of balancing a range of options and without time constraints are highly valued by parents and may be preferred above apparently straightforward and fast solutions. In this respect, the report sets the scene for how contemporary care should be conceived, organized and financed by health care authorities. Such circumstances will provide a more fertile soil for credible management options that aim at empowering children who have a genital difference.

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