General Medical Information

Ethical Issues in Sexual Differentiation Disorders

Sarah E. Herbert

There are a number of important ethical issues that confront medical professionals and parents of children with ambiguous genitalia. Conflict may arise regarding the most beneficent or nonmaleficent course of action. Physicians often have advised parents that early surgical intervention is the most beneficent course of action. In their opinion, it would be most harmful to have the parents reject the child because of atypical genitals or to have the child endure potential ridicule and embarrassment in the early childhood years. Impairment of adult sexual functioning, however, has been attributed to this early surgical intervention by a number of intersex individuals who are speaking out about their condition as adults. In their opinion, the surgical intervention to make them look “normal” was not worth the sexual dysfunction they experience as adults. Cheryl Chase, founder of the Intersex Society of North America (ISNA), states, “Nonconsensual surgery cannot erase intersexuality and produce whole males and females; it produces emotionally abused and sexually dysfunctional intersexuals”.

Surrogate decision making is another ethical issue being considered. Decisions about sex assignment at birth and surgical intervention in infancy do not allow the child or adolescent to have a role in the decision-making process. If surgery were to be postponed until the teenage years, the affected individuals would be able to make the decision themselves about this important issue, thus taking a course that respects the person and permits more autonomy.

Ethical conflicts have arisen for parents and medical professionals when telling the truth about the anomaly has come into conflict with secrecy that is believed to be in the best interest of the child or adolescent. Some adult patients have described feeling so betrayed because of lies by parents or medical specialists that they became alienated from their families and avoided medical care for many years. The diagnosis of androgen insensitivity syndrome in an adolescent girl illustrates the complexity of ethical issues. Because this diagnosis often is made in the adolescent years, there has been a good deal of debate about when and how she should be told about her chromosomal status and the presence of testes. Some professionals do not recommend telling patients about this information, at least until they are more mature and in their adult years, because identity and sexuality are such important issues in adolescence. Other physicians recommend partial truths, reassuring these patients and their parents that they are genetically female, but just have some “male chromosomal material, and gonads that will need to be removed”. Other health professionals and patients have recommended a more open approach to disclosing information. They suggest that it is better to learn the truth in circumstances where physicians and parents are available to provide education and support, rather than risk unplanned disclosure that leaves the individual feeling alienated and betrayed by those she trusted.

Major conflicts have arisen when parents and physicians disagree about the advisability of surgical correction of genital ambiguity. There has been consideration of whether parental refusal of surgery is grounds for declaring medical neglect or abuse and overriding the parents’ decision. This has not come about, because a child has to be in imminent danger of dying for the legal system to consider removing parental rights as surrogate decision makers for their child.