Ethical issues with early genitoplasty in children with disorders of sex development.

Abstract

Genitoplasty in children with disorders of sex development (DSD) is an ethically complex issue. From a surgical perspective, genitoplasty in early childhood is preferred because it is felt to be associated with improved tissue healing, decreased risk of complications, and reduced psychological impact of genital surgery. However, advocacy groups and recent ethics literature have argued for deferring genitoplasty until a child reaches decisional maturity. This article reviews these arguments using an ethical framework and discusses the application and challenges of recent disorders of sex development research. Recent ethics literature and advocacy groups have argued for deferring genitoplasty until a child reaches decisional maturity. As a counterpoint, urological societies have published arguments supporting the practice of early genitoplasty. Data from DSD research lends some guidance but also has a wide range of outcomes, which makes generalizability difficult. A retrospective, multicenter study of 21 individuals with congenital adrenal hyperplasia who underwent feminizing surgery showed no difference between cases and controls in social functioning, parent-child relationships, or sexual fulfillment. Ninety percent of patients thought genitoplasty should occur within the first year of life. In a study of 52 patients with 46,XY and 46,XX DSDs who underwent masculinizing genitoplasty, 57% thought their physical appearance was 'fair' or 'poor,' and problems with sexual function, urinary incontinence, and short penile length were common. Early genitoplasty in children with DSDs is ethically complex, and discordant results in DSD research makes generalizability difficult. There is unlikely to be a universal solution to the issue of early genitoplasty in children with DSDs; families must be supported while they weigh both parental decision-making and the objective of ensuring an open future for their child.