Very Scary Study Shows How Far Some Doctors Will Go to Make Girls be Girls

I got a note from the New View today about a study that appeared in the Journal of Bioethical Inquiry last week. It exposes the fairly commonplace practice of prescribing the steriod dexamethasone to pregnant women who have a potential genetic risk of having children with congenital adrenal hyperplasia. Why is that scary? For a whole lot of reasons.

First of all, dexamethasone has never been approved for this use. This is an off-label use of the drug. It's a steriod that is used mainly as an anti-inflammatory. Some people use it illegally as a sports performance enhancer. Dexamethasone is a potent drug with very serious side effects. There have never been any studies proving the efficacy and safety of its use prenatally. One recent small study showed some effects of the drug on the working verbal memory of children who's mothers took it during pregnancy. It has also never been shown to effectively prevent or treat CAH in utero.

So if this random off-label use of a serious drug with major side-effects isn't scary enough on it's own, check out the reason they are prescribing it. Congential Adrenal Hyperplasia is a genetic defect which can result in females being born with ambiguous or more male-looking genitalia. It affects the production of sex steriods and so can have an effect on primary and secondary sex characteristics and sexual development. The object of the prescription is to attempt to 'normalize' the development of the fetuses.

The fact that we are not entirely sure what this drug actually does to kids who get it before they are born aside, it may seem like a perfectly legitimate thing to do. The study provides quotes from doctors explaining the potential long-term life-altering effects of the masculinization of female genitalia due to CAH including potential wrong gender-assignment at birth, psychological problems, and painful genital surgeries with major risk of side effects. So yes, maybe one could see that as legitimate, except that most of those things can be avoided simply by not focussing on a binary gender assignment for a child at birth and not insisting that genitals look 'normal'. But it gets worse, the study goes on to quote doctors positing that one of the main issues with CAH girls is that they don't act like girls, often have little interest in dolls and other girl activities and show much less interest in getting married and having children than non CAH girls. They believe that this originates in the brain and that dexamethasone can change that. No, I am not making this up! Read the study, it's right in there.

So really, what's happening here is that doctors are prescribing a drug to try to prevent a condition which makes girls not look and act like girls - and there is no evidence that this drug actually works and no evidence that it's safe to use in this way.

I know it's hard to believe that this could happen. Surely, you might think, the side effects must be minimal and this drug must be relatively safe in general, otherwise they would never do this. But it has happened before. From the 1940's to the 1970's, millions of women were given DES (diethystibestrol) - mostly to alleviate morning sickness and miscarriage. Later, it was discovered that DES is actually carcinogenic and caused serious issues for children who were exposed to it. Girls who's mothers took DES have a greatly increased risk of cervical cancer amongst other reproductive problems. So yeah, it can happen and it does happen.

This is another case of rushing to a medical/pharmaceutical intervention when none is really even required. The study shows that women have been given this drug if they have the genetic makeup with the potential to have a child with CAH. They can't know if the baby has CAH until it's born. Only one in eight women that are identified as at risk will actually have a child with CAH so 87% of these women will end up having taken this drug and exposed their children for no reason whatsoever.

The only thing I can say about this is that we really have to be advocates for ourselves when it comes to health care. I don't know if this is happening in Canada. This study was done only in the USA. But other things like it are happening. We really need to question our doctors when they suggest prescriptions and treatments - find out what's in them and what the side effects are and how serious the condition actually is in the first place. Sometimes the treatment is worse than the disease.