Exploring gray areas in the law about DSD and sterilization
Legal rules about parental consent are different when fertility is on the line.
Several months ago, I wrote a column pointing out that many physicians may be unaware of the legal implications of gonadectomy or sterilization in cases of differences of sex development. The column generated much discussion, and I have learned that not only are many physicians unaware of this area of law, but many hospital attorneys are unaware that such procedures are occurring in their hospitals without consideration of the legal aspects. I received so many requests for clarification that I decided more explanation would be useful.
Sterilization implicates a minors fundamental right to control reproduction, and courts treat this issue differently from other medical decisions. Where parental consent is not adequate to authorize sterilization, a court order approving the parents decision is necessary. Otherwise, the physicians as well as the parents could face liability even decades after the procedure.
It is important to understand that we are talking about an area where the law may be unclear. What is plain is that parental consent is generally not adequate to authorize sterilization of a minor in which sterilization is the purpose of the procedure. On the other hand, parental consent is usually adequate to authorize a clearly necessary medical procedure that has the unfortunate adverse effect of sterilization, such as removal of cancerous testicles. But differences of sex development (DSD) often raise questions that fall outside these clear categories. When gonadectomy or hysterectomy is elective that is, not necessary to preserve life or limb we enter a legal gray area: How urgent does the medical indication need to be before parental consent to sterilization is adequate? In some cases of DSD, we have an additional consideration: What counts as sterilization? The examples below may help to illuminate some of the legal questions involved.
Case study 1: Julio
Julio is a 15-year-old with 46,XX congenital adrenal hyperplasia. He was born in South America with fully masculinized external genitalia (Prader 5) and raised as a boy. His family moved to the United States when he was 12 years old. He has never been told that he has XX chromosomes, a uterus and ovaries, although his parents have known the details of his condition for years. He is energetic and intelligent and seems content as a boy.
His parents brought him to the clinic due to the onset of menstruation. They are very distressed and want him to have an immediate hysterectomy. They are adamant that Julio should not be told the details of his medical condition. They have requested that the doctors perform the operation, telling Julio only that it is necessary to stop the bleeding.
Julios doctors believe that hysterectomy is a reasonable option in this situation. However, they are concerned about the fact that Julio does not know about his condition, and they are hesitant to perform this procedure without his input.
Julios parents and his physicians should seek the approval of the court for the procedure. Julio is old enough to intelligently participate in the decision to have surgery, and a court is almost certain to require consideration of his opinion. With both ovaries and a uterus, Julio has the potential to be fertile, even though such fertility contradicts his gender assignment. His right to procreate should be protected, and the legal way to protect his rights is to seek a courts approval of the procedure. Additionally, this type of surgery would come very close to the line of demarcation between surgeries with sterilization as an adverse effect and surgeries with the primary intent of sterilization. Because ending Julios menstruation his fertility is the intent, it is arguable that the primary purpose of the surgery is sterilization. Further, there are less invasive ways to deal with development of unwanted secondary sex characteristics. These factors all point to the necessity of court approval.
Case study 2: Beth
Dr. A is a pediatric surgeon who has been called in for a hernia repair operation on Beth, a 2-month-old girl. In the course of the operation, Dr. A discovers that Beth has abdominal testes instead of the expected ovaries and no internal female reproductive organs. With the operation still in process, Dr. A consults with a pediatric endocrinologist, who concludes that this is a probable case of androgen insensitivity syndrome (AIS) and recommends removing the gonads immediately due to risk for cancer. Gonadectomy in such a case is in line with existing standards of care, although a recent international consensus statement on DSD states that deferral of gonadectomy until adolescence is an acceptable option, noting that the reported risk for cancer is less than 5%, with no cases reported before age 14 years. Most parents in these circumstances authorize gonadectomy. However, some doctors experienced with AIS are now recommending delayed removal of testes to allow a feminizing puberty without a need for exogenous hormones, and some parents choose this option if it is presented.
In this case, the need for a court order is less obvious because of the recognized risk for tumor development and the likelihood that Beth will not be fertile. Indeed, there is some question as to whether a court would even consider this procedure to be a sterilization. On the other hand, a court may consider the possibility that fertility technology could advance within Beths reproductive lifespan and that gonadectomy would leave her unable to make decisions about whether to take advantage of such developments. The fact that the risk is relatively low and Beth may be mature enough to participate in the decision before the risk becomes significant puts this situation in a different class from a case of active testicular cancer. It would still be prudent for the physicians to consult with an attorney about the specifics of the situation and of their state law. Furthermore, the parents decision should be made outside of the current surgery when they have time to calmly and rationally consider the statistics and options.
Of course, these case studies present many legal and ethical questions beyond the single issue explored here: whether parental consent is sufficient to authorize sterilization or gonadectomy. They illustrate, however, how complex even that one question can be. An attorney experienced in questions of surrogate consent for sterilization can help determine the need for court approval by considering the specifics of the case: the potential for fertility now and in the future, the degree and urgency of the medical indication, the availability of less-invasive treatment, the minors ability to participate in the decision and relevant state law.
Anne Tamar-Mattis, JD, is an Executive Director of Advocates for Informed Choice, Cotati, Calif. She welcomes responses to this article at firstname.lastname@example.org.
For more information:
- Consortium on Disorders of Sex Development. Clinical guidelines for the management of disorders of sex development. DSD guidelines website. dsdguidelines.org. Accessed Sept. 9, 2009.
- Lee PA. Arch Dis Child. 2006;91:554-563.
- Tamar-Mattis A. Gonadectomy, sterilization and disorders of sex development. Endocrine Today. Feb. 10, 2009.