Protecting Children with Intersex Traits: Legal, Ethical and Human Rights Considerations

Abstract

Some infants born with intersex traits, such as chromosomes, gonads, or sex anatomy that do not fit typical definitions of male and female require immediate medical treatment to address significant physical health risks. Many babies born with intersex traits, however, are not prone to any immediate or future physical health risks related to their intersex condition. This article focuses on this second group of infants. Many of these babies are subjected to surgeries to remove healthy gonadal tissue and procedures to modify the appearance of their genitalia based on the assumption that children growing up with atypical sex characteristics will suffer psychosocial trauma and stigma.

Some physicians report that patients who have undergone these procedures are generally satisfied with their surgical results, while other studies report significant patient dissatisfaction. Despite over two decades of widespread calls for comprehensive studies to prove whether these surgeries are beneficial, comprehensive studies have not been conducted. Therefore, infants with intersex traits are being subjected to surgeries to cure a potential psychosocial problem without proof of either the existence of the presumed psychological harm or the efficacy of the treatment to prevent such harm. Whether these surgeries provide a psychosocial benefit is critically important, however, because genital surgery has led to serious harm in some instances.

Until comprehensive studies are conducted, treatment teams have to negotiate the rocky terrain of finding the optimal treatment course for enhancing the quality of life of a child born with intersex traits. In determining the best path, physicians must consider their legal and ethical obligations to the patient: the child undergoing the procedure. This chapter highlights the legal and ethical issues that arise when physicians counsel parents who are responsible for making treatment decisions on behalf of their children with intersex traits.

Keywords: DSD, Ethics, Gender, Human Rights, Informed Consent, Intersex, Sex