Current Medical, Psychological, and Ethical Implications for Treating Differences of Sexual Development (DSD)

Abstract

Purpose of Review Differences of sexual development (DSD) have significant implications on a child’s health and quality of life. Traditionally, DSD have been treated with early surgical intervention; however, physicians, researchers, and advocates are increasingly working towards balancing medical indications, psychological implications, and necessary ethical questions. Despite the rapid evolution of DSD management, the latest recommendations call for shared decision-making (SDM) but fail to highlight ethical issues or practices that respect the rights of pediatric patients. Recent Findings Since the most recent DSD treatment guidelines, published in the 2006 Consensus Statement, research further defines the best SDM for the treatment of DSD as comprising the cooperation of a multidisciplinary team working with patients’ parents. The collaboration of various experts and well-informed parents will expectantly improve the current issues in treatment including excessive rates of unjustified gonadectomies, removal of genital structures, and loss of fertility among patients with DSD. Despite recent research, the psychological impact of early surgical intervention remains inconclusive, but studies highlight the strong need for early and continuous psychological treatment starting with incorporating psychiatrists in the SDM team. Additionally, medical ethics question the legality of performing irreversible medical treatments on patients who cannot consent on their own and the ability of parents and physicians to engage in an effective decision-making process. As a result, many medical and government organizations have called for the elimination of early invasive treatment whereas surgeons and researchers are developing new techniques to preserve genital structures and fertility while correcting medically necessary aspects of DSD. Summary This narrative review discusses the progress made since 2006 considering malignancy risks, fertility, urogenital function, psychiatric management, parental consent, patient autonomy, decision-making ability, and communication effectiveness. The authors also highlight areas that require further improvement and propose next steps in improving care for individuals with DSD.