Recent editorials in this publication have raised questions about the
legalities surrounding gonadectomy in children with disorders of sex
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
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.
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.
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 childrens hospital
with oversight by a nationally known bioethics committee. The committee and the
physicians involved were concerned about protecting Ashleys 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, Ashleys 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 Ashleys
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.
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
A state may have clear laws applying to developmentally disabled people
but none that specifically mentions children or other incompetent patients.
Such a gap doesnt mean that children arent 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
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.
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
For more information:
- American Academy of Pediatrics, Committee on Bioethics.
Sterilization of minors with developmental disabilities.
- 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
Published May 8, 2007. Accessed Dec. 3, 2008.
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
- 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.