Gonadectomy, sterilization and the child with disorders of sex development

State laws regarding sterilization may be confusing or unfamiliar to medical providers.

Recent editorials in this publication have raised questions about the legalities surrounding gonadectomy in children with disorders of sex development.

Although the law is clear that parents generally cannot consent to sterilization of a minor without a court order, no published court decision addresses how these laws apply to cases of disorders of sex development. Furthermore, some medical providers seem unaware of the existence or scope of such laws.

A recent case in Washington, although it did not involve a disorder of sex development, highlights the importance of understanding the law before undertaking elective gonadectomy.

The ‘Ashley Treatment’

In 2007, a young girl by the name of Ashley caught the attention of the news media, disability rights advocates and endocrinologists across the United States. Shortly after birth, Ashley was diagnosed with static encephalopathy. Her parents were informed that their daughter would not mature intellectually past the age of 3 months; she would never walk, talk, feed or bathe herself.

Anne Tamar-Mattis

When Ashley was 6 years old, her parents and doctors decided that she would undergo an experimental “growth attenuation” procedure using high-dosage estrogen therapy to limit her growth. The goal was to keep her smaller so that she would be more comfortable and could more easily continue to participate in family activities.

The “Ashley Treatment” also involved a hysterectomy and removal of breast buds, intended to spare her difficulties of menstruation and risk of cancer and decrease her risk of sexual abuse.

These procedures were conducted at a leading children’s hospital with oversight by a nationally known bioethics committee. The committee and the physicians involved were concerned about protecting Ashley’s interests, and they considered the issue in depth during the course of several meetings. The bioethics committee unanimously supported the recommended treatment, noting that court review was required before undertaking the hysterectomy.

However, Ashley’s physicians did not get a court order before proceeding with treatment, relying on an opinion by the parents’ attorney that a court order was unnecessary because of the degree of Ashley’s disability and because sterilization was not the primary purpose of treatment. Unfortunately, the attorney was mistaken.

After the “Ashley Treatment” was publicized, the Washington Protection and Advocacy System — the agency charged with federal authority to investigate allegations of abuse against disabled people — opened an investigation. It was determined, and the hospital agreed, that the sterilization and probably the growth attenuation treatment were in violation of the law. The hospital agreed to improve internal controls to ensure that no sterilizations could take place without the necessary court order in the future and also to seek a court order and notify Washington Protection and Advocacy System before commencing growth attenuation treatment in the future.

Sterilization of minors and the law

In the first half of the 20th century, sterilization of people with developmental disabilities was a widespread practice. This began to change after 1942, when the U.S. Supreme Court ruled in Skinner vs. Oklahoma that procreation is a fundamental human right protected by the Constitution. In the wake of Skinner, a confusing array of state laws, court decisions and regulations have arisen restricting the practice of sterilizing patients who are not competent to provide their own consent.

Generally, consent of a parent or guardian is not legally adequate to authorize sterilization — a court order is necessary. However, there are variations in process and application from state to state. For example, in many states a parent or guardian may authorize a necessary procedure that will lead to sterility as an undesired adverse effect, such as treatment for testicular cancer.

A state may have clear laws applying to developmentally disabled people but none that specifically mentions children or other incompetent patients. Such a gap doesn’t mean that children aren’t protected, however.

The basis of the right to avoid involuntary sterilization is constitutional, connected to the fundamental rights to privacy, bodily integrity and control of procreation. The contours of these rights are not yet fully defined because not every situation has been explored by a court or legislature.

In the Ashley case, the Washington Protection and Advocacy System concluded that parental consent may be inadequate for other forms of highly invasive and irreversible treatment such as growth attenuation. If a court finds after the fact that parental consent was inadequate for an elective invasive procedure, both parents and doctors could face significant liability.

DSD and sterilization

So how does all of this apply to the situation of children with disorders of sex development? Often, sterilization is not an issue in these cases, either because the child is born infertile or because fertility is preserved. However, situations still exist in which children with disorders of sex development are sterilized. For example, in a recent study, one-third of pediatric urologists surveyed favored female gender assignment — which usually includes orchiectomy — for children with 46,XY disorders born with a rudimentary phallus and cloacal exstrophy. These children have functioning testes and should be fertile if their testes are left in place. It is likely that orchiectomy in these cases requires a court order.

What if gonads are removed from children who would not be fertile without intervention, but who could participate in assisted reproduction (or reproduce via interventions that might be developed in their lifetime)? An example of this would be gonadectomy in a child with true hermaphroditism, ovotestes and a rudimentary uterus.

What if the child might never be fertile but the gonads might have some other function, as in the case of androgen insensitivity? No court has ruled on these questions, but one could find that they, too, require a court order.

How can a physician address this uncertainty? It is certainly prudent to consult with an experienced attorney before undertaking elective gonadectomy or other procedures that could affect fertility. To avoid conflicts of interest, the attorney should represent the medical providers, not the parents. The child may need separate representation. It will be important for counsel to understand the medical issues involved (including differing schools of thought about treatment), and to consider recent developments such as the Ashley case. If there is doubt, it is far easier to obtain a court ruling in advance than to deal with a legal mess afterwards.

Anne Tamar-Mattis, JD, is an Executive Director at Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at director@aiclegal.org.

For more information:

• American Academy of Pediatrics, Committee on Bioethics. Sterilization of minors with developmental disabilities. Pediatrics. 1999;104:337-340.
• Bankhead C. Urologists agree on gender assignment surgery. Urology Times. 2005;33:4.
• Carlson DR, Dorfman DA. Investigative report regarding the “Ashley Treatment.” Disability Rights Washington website www.disabilityrightswa.org. Published May 8, 2007. Accessed Dec. 3, 2008.
• U.S. laws struggle to keep up with gender advances. Endocrine Today. July 10, 2008.
• Liao SM, Savulescu J, Sheehan M. The Ashley treatment: best interests, convenience, and parental-decision making. Hastings Cent Report. 2007;37:16-20.
• Skinner vs. Oklahoma, 316 U.S. 535 (1942).
• Tamar-Mattis A. Letter: The law as it applies to DSDs. Endocrine Today. 2008;6(15):5.