The treatment seems straightforward enough at first glance. Using the steroid dexamethasone, clinicians are trying to treat a condition called congenital adrenal hyperplasia (CAH) right at from the womb. CAH is an in-born condition characterized by a malfunctioning adrenal glad that leads toa serious hormonal disruption and the development of ambiguous genitalia. Children born with CAH have to be treated with steroids and hormones their whole life. Female babies born with CAH have a higher tendency towards tomboyism and lesbianism.
However, bioethicists at the Northwestern University Feinberg School of Medicine believe that the prenatal treatment goes beyond just CAH. Researchers Alice Dreger and Ellen Feder believe that prenatal dexamethasone may be misused to prevent the occurrence of homosexuality.
Prof. Dreger states:
This came to light when parents who were carriers of the CAH genes had their babies checked for the abnormality while still in the womb. An endocrinologist researcher at Mount Sinai Medical Center in New York City prescribes dexamethasone to pregnant women carrying babies with CAH. The only problem is that this kind of therapy using dexamethasone is off-label, e.g. the drug is approved for use in other conditions but not for this specific one – CAH. And the patients who received the steroid were not informed about this. Off-label use is not illegal and often done at the discretion of the doctor. However, there are certain procedures necessary to do this, including explain to the patient the risk and benefit and obtained a signed informed consent from the parents.
There are supporters for the dexamethasone (“dex”) treatment. It spares the baby the embarrassment of having ambiguous genitalia that would need to be corrected later. According to Dr. Ingrid Holm, a pediatric endocrinologist at Children’s Hospital in Boston.
However, there are those who question the safety of the treatment as the drug has not been fully properly tested in humans. In addition, although the drug addresses the problem of ambiguous genitalia, it does not address the real cause of the problem, e.g. the endocrine disruption. Some doctors believe it is the parents’ anxiety about the condition that is being treated but not necessary for the benefit of the child.
The controversy about dexamethasone is not new. It has been around for decades. However, with the advent of genetic prenatal diagnostics, more and more parents are asking for treatment long before the child is delivered with the embarrassing problem. However, it is not only the genitalia that may be abnormal. Girls with CAH would not behave like typical Barbie-touting girls. One researcher wrote:
“CAH women as a group have a lower interest than controls in getting married and performing the traditional child-care/housewife role. As children, they show an unusually low interest in engaging in maternal play with baby dolls, and their interest in caring for infants, the frequency of daydreams or fantasies of pregnancy and motherhood, or the expressed wish of experiencing pregnancy and having children of their own appear to be relatively low in all age groups.”
The bioethicists at Northwestern University are concerned that this treatment is being used to manipulate the sexual orientation of female babies while still in the womb. They were especially concerned about a paper that proposes using prenatal dexamethasone to change the behavior of girls with CAH to be “closer to the expectation of heterosexual norms.”
At the moment, the medical community is divided about the pros and cons of the dexamethasone. However, a new consensus from seven major medical organizations (including the American Academy of Pediatrics) is expected to be published in the coming months regarding this issue.