Anne Tamar-Mattis, JD

For several decades now, prenatal dexamethasone has been used off-label by some physicians treating pregnant women at risk for carrying a female fetus with 21-hydroxylase deficiency, the most common form of congenital adrenal hyperplasia.

Nicole is a young woman with complete androgen insensitivity syndrome who is about to head off to college. She is also thinking about starting the process of dilation to enlarge the shallow vaginal opening she was born with as a result of her condition. She may need to spend several hours a week attending to this intimate procedure, and she is apprehensive about how she will accomplish this in a dorm setting with roommates.

One of the most contentious topics in the treatment of differences of sex development is early genital surgery for children with atypical genitals.

I recently returned from the annual conference of the Androgen Insensitivity Syndrome Support Group USA.

Over the past 15 years, there has been a growing chorus of voices — medical professionals, parents and affected adults — calling for more research into long-term effects of medical treatment of children with differences of sex development.

“This girl doesn’t have a uterus!” exclaimed the resident. Soon, a small group of residents was huddled around the ultrasound of a 15-year-old who had come into the small-town clinic for evaluation of primary amenorrhea. “Could she have androgen insensitivity?” mused one. “If she does, we’re not supposed to tell her.”

In previous articles, I said information given to parents of children with differences of sex development is often inadequate to meet legal requirements of informed consent.

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.

I was at a medical conference last month and the subject of referring parents of children with differences of sex development to peer support groups came up. The speaker explained that this kind of support can be a lifeline to parents. One participant said, “I would like to refer parents to support groups, but I can’t because hospital administrators told me it would violate HIPAA.” The other attorney in the room and I shared a frustrated glance. We had heard stories like this before.

I am married to a small town doctor, which means I have many friends among the residents and staff of our local hospital. Some of them take an interest in my work as an advocate for children with differences of sex development, and last week I was invited to give a talk to the family practice residency program.