Intersex Human Rights Australia

Hilde Lindemann, Ellen Feder and Alice Dreger comment on prenatal use of dexamethasone to modify appearance and gender expression associated with Congenital adrenal hyperplasia:

There’s a common misperception that, now that the Johns Hopkins psychologist John Money is gone, so are all the ethical problems with the way people with genital anomalies are treated. Not so.

You may recall that Money lied about the life of his patient David Reimer (known as “John/Joan”), who as a baby had been sex-changed on Money’s recommendation following a circumcision accident in which a physician burned off most of Reimer’s penis. Despite David’s actual later reversion to a male gender identity, Money used a false version of Reimer’s story to convince clinicians that children with atypical sex could be made into “acceptable” versions of girls or boys if you just did surgery early, did hormone treatments as necessary, and avoided having the patients understand much beyond the party line about their genders.

These days, we’ve got a lot of questions about what’s been going on with the use of prenatal dexamethasone to try to prevent children from being born with atypical genitalia. …

Dr. Maria New, formerly of Weill-Cornell and now of Mount Sinai School of Medicine and Florida International University, continues to be the leading proponent for giving prenatal dex to women at risk for CAH. New says she has treated over 600 such pregnant women. Since this is an off-label use, it may be technically classified as a “clinical innovation” undertaken by a physician rather than a clinical trial undertaken by a researcher. But New and her colleagues have been obtaining grants for and publishing follow-up studies of these women and children.

Despite our best efforts, we cannot determine whether prenatal dex has been administered in the U.S. as part of clinical trials for preventing virilization. If it has, at least we could be assured the pregnant women exposed to this have had IRBs overseeing the projects and we could assume good science will come out of the experiments performed on them. It would be good to know a lot more about what’s happened to these mothers and their babies.

But if prenatal dex has been pursued in clinical trials, we have to say we can’t imagine what on earth the IRBs were thinking in approving them. This looks to us like just the sort of ethically problematic experiment IRBs were designed to prevent, since there is no clear medical benefit and there may be substantial risks including to unaffected women and children. To us, and to many of our colleagues, this sure looks like another case of doctors assuring parents, when their children are at risk for sex atypicality, that they don’t need to worry their pretty little heads about the science and the safety issues. Just let the doctor take care of it all.