Ethical Issues in Decision-Making for Infants with Disorders of Sex Development

Medical decisions for infants and children should generally be based on the best interests of the child. When there is legitimate controversy over the child's best interests, the right of the child to an open future should generally determine the course of treatment. In the case of infants born with disorders of sex development (DSD), early cosmetic genitoplasty was long believed to be in the child's best interest and was therefore the standard of care. New data suggest that early genitoplasty may be more harmful than helpful, therefore the best interest standard is no longer determinative in such cases. Because children born with DSD have a right to an open future, and because the openness of their future is clearly enhanced by delaying cosmetic genitoplasty until they themselves can participate meaningfully in decision-making, early genitoplasty is ethically supportable only when medically indicated (e.g., when the child is unable to urinate without surgical intervention). Further research is needed to clarify the benefits and burdens of early and delayed genitoplasty. In parallel with further research, efforts should focus on educating society broadly to decrease stigmatization of persons with DSD.