Ethical perspectives on the management of disorders of sex development in children

Abstract: The management of a child with disorders of sex development is complex from both a medical and sociocultural perspective. Decisions impacting the future sexual function and sex identity of the child are made on behalf of the child by their parents and health care providers. Such decisions are rarely straightforward and outcome data to guide practice are limited and conflicting. This manuscript explores the ethical issues present in prenatal diagnosis, sex assignment, medical management, and surgical intervention in the case of children with disorders of sex development. Suggestions for an ethics-based approach to management are offered including the use of multidisciplinary teams and guidelines, improved communication between providers and parents, the early and continued inclusion of mental health professionals, and the use of an independent review of treatment plans. The goal of an ethics-based management approach is the promotion of the autonomy and wellbeing of the affected child. Keywords: intersex, disorders of sex development, ethics, decision-making