A press release landed in my inbox today with this headline, which raised my eyebrows (as it was obviously intended to do): "First Experiment to Attempt Prevention of Homosexuality in Womb." It starts with this quote from Alice Dreger, a Northwestern University bioethicist: "This is the first we know in the history of medicine that clinicians are actively trying to prevent homosexuality." The release was announcing the publication of a piece at the Hastings Center Bioethics Forum titled, "Preventing Homosexuality (and Uppity Women) in the Womb? -- it was written by the same authors that started quite a stir recently over one researchers use of vibrators in follow up exams with young girls to test whether their clitorises worked after he'd surgically altered them.
The gist: In an
attempt to reverse the effects of a disorder called congenital adrenal
hyperplasia (CAH), an endocrine disease that can result in ambiguous
genitalia and "increased rates of tomboyism and
lesbianism," pediatric endocrinologist Maria New has been giving dexamethasone to pregnant women to see if it will reverse the disorder (the drug isn't approved for pre-natal use, but it's used to treat the disorder itself, which results from a steroid deficiency). Time
magazine recently reported that there are questions about
whether the drug causes birth defects, whether it's being used with proper informed consent, and whether such
off-label experimental drug use should require IRB oversight (as many experts argue that it should, though it doesn't presently). Now Dreger and her colleagues are looking at another aspect of this research, namely, how the scientists involved are portraying homosexuality, what qualifies as "normal" when it comes to masculine vs.
feminine traits, and where exactly this research is going:
Most clinicians who use prenatal dexamethasone for CAH seek
to
prevent the development of ambiguous genitalia. But the New York-based
group of clinical researchers ... suggest that prenatal dexamethasone
can also be used in this population to prevent the "abnormality" of
homosexuality, as well as the
"abnormal" interest these girls tend to have in traditionally masculine
careers and hobbies.
I've been a wee bit busy writing and talking about another big bioethics story (i.e. the one in my book, The Immortal Life of Henrietta Lacks), so I haven't dug into this one, but my gut reaction is that the
headline of the press release strikes me as sensational and misleading: The researchers
are looking at this drug's impact on various aspects of a disorder -- they haven't engineered an experiment in which they're giving this drug to pregnant women in an attempt to prevent homosexuality. (Unfortunately, sensational headline like this lead to other freaked-out headlines like, "Awful Doc Drugs Pregnant Women to Make Their Babies More Girly.") Dreger and her colleagues are concerned that this research is headed in that direction because the scientists involved have said that their studies may apply to
homosexuality in general. Dreger is also disturbed by how this research approaches the idea of biologically "normal" female behavior:
In another paper called "What Causes Low Rates of Child-Bearing in Congenital Adrenal
Hyperplasia?" [New's colleague] writes that "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 paper] suggests that treatments with
prenatal dexamethasone might cause these girls' behavior to be closer
to the expectation of heterosexual norms ... [another paper goes] further,
constructing low interest in babies and men - and even interest in what
they consider to be men's occupations and games - as "abnormal," and
potentially preventable with prenatal dex ...
Hot button issue? Indeed. Dreger has written a detailed post over at Psychology Today that starts with the provocative question, "What's wrong with taking a steroid, while you're pregnant, to try to
increase the odds that your female fetus will someday grow up to be a
straight woman who gives you grandchildren, and not a lesbian daughter
more interested in puppies?" And of course, there's more on this in the full Hastings Center piece, which you can read online here.
(Photo credit here)
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I have never wanted to have a baby, I don't find them appealing at all, and yes I do love puppies (in fact, I find every furry mammal species more appealing than human babies). I have never been diagnosed as CAH, but have often felt at odds with the mainstream which assumes that "every woman wants to have children". Use of this drug in pregnant women is very disturbing.
This is sickening.
This woman has no place in medicine trying to alter human sexual behavior that is not harming anyone.
I'm just wondering what kind of mother (or father, for that matter) feels the desire to control their pregnancy to these lengths? How pathetic and vain that some day...a woman might only give birth to a child so long as she has complete control over not only physical characteristics, but also over things like sexual preference and identity. This is sick.
And the idea of filing occupations, behavior, and hobbies into gender based norms? How archaic! This is 2010.
From some of the various articles I've been reading there is no credible evidence that dex prevents or cures CAH to start with. So a flimsy excuse to do something amoral at great risk to patients for the sake of thinly disguised misogyny and homophobia.
When research is presented dishonestly, it's no surprise the comments in response tend to be characterized by ignorant self-righteousness. People, think: if it sounds outrageous to you, might it just be possible that the person describing it to you doesnt understand it or is deliberately misrepresenting it? CAH is a genetic disease involving a defect of cortisol production. It occurs in a spectrum of mild through severe forms. Without treatment the severe forms cause death; we try to catch and treat them by newborn screening programs-- the same ones that catch and prevent cretinism. More moderate forms cause early puberty or loss of height. The mildest forms cause a polycystic ovary-like syndrome with infertility. You can call all these things (and other congenital hormone deficiencies like cretinism) simply "human variation" and criticize the parents and doctors who try to treat them with hormone replacement. What's wrong with being infertile? For that matter, what's wrong with being retarded? Pretty soon the fascist doctors will be trying to prevent all human differences, won't they? And maybe we had better set up panels to review and approve or forbid parents' attempts to fix or ameliorate their children's birth defects. Surely it would be better to insist that we all honor the differentness of a cleft lip, or deafness, than allow parents and doctors to subject a child to surgery to "fix" it? How dare parents try to seek replacement of their children's hormone deficiencies!
The treatment for CAH is replacement of glucocorticoid. One of the effects is the lowering of testosterone levels in little girls from severely elevated to mildly elevated. This treatment was discovered about 60 years ago and was considered a major medical advance. About 30 years ago, a few doctors began to try to supply the glucocorticoids prenatally, through the mothers' circulation, to try to get a head start on reducing the testosterone levels, to reduce the severe virilization of the genitalia and avoid the dilemmas of early/late/no surgery, or the rarer but even worse dilemma of whether to raise a girl with no vagina or a boy with no testes. Dexamethasone happens to be the glucocorticoid that can best be given to a fetus via the mother. It has always been an elective treatment, and never presented as risk-free. Like many, many medical treatments, both doctor and patient must weigh the potential harm against the potential benefit.
Go back and review 30 years of papers on prenatal treatment of CAH. "Preventing homosexuality" has never been the primary goal of treatment, and only a couple of papers even mention the it as a possible secondary effect. It is simply dishonest of Alice Dreger, and ignorant of the bloggers here, to pretend that it has been. Look at even the worst examples she can point to. One is a speculation by a psychologist that one of the unexpected effects of prenatal treatment MIGHT be an increase in the fertility rate of women with this disease, MAYBE by offsetting the effects of male androgen levels on the infant brain. The other evil example is similar SPECULATION in a paper and at a meeting by some women scientists that this might be considered a secondary benefit of prenatal treatment and it will be interesting to see whether marriage and fertility rates are higher in the girls treated prenatally.
Attacking the motivations of these women and other doctors who treat this condition, and the parents who make the choice to do the treatment, does no credit to this blog. Few things are as unattractive as ignorant self-righteousness.
David: You seem to be reacting to the piece that this post links to rather than to the content of this post itself. This post simply reports on the existence of this debate and actually points out that these studies weren't about "preventing homosexuality." It clearly says above that, "the headline of the press release strike me as sensational and misleading: The researchers are looking at this drug's impact on various aspects of a disorder -- they haven't engineered an experiment in which they're giving this drug to pregnant women in an attempt to prevent homosexuality. (Unfortunately, sensational headline like this lead to other freaked-out headlines like, "Awful Doc Drugs Pregnant Women to Make Their Babies More Girly.")"
Of course I am reacting mainly to Alice Dreger's dishonesty-- she knows better and deliberately chose to misrepresent it for reasons I have no charitable explanation for. However your respondents 1 through 4 are exactly "ignorant self-righteousness" epitomized. If you don't share their opinion of the piece, why did you post it with no cautions or attempt to understand it or get behind it?
I'm a professional journalist -- if I were writing about this for publication, I would report on it and write a detailed story that explores all sides of the debate. But this is a blog. And it's a blog related to bioethics, so this post was simply to let interested readers know that the debate is out there, and to point out that the headlines seem sensationalized. That's what blogs do -- this one of the many ways they differ from professional journalism. And this will be my last response to this.
It did not appear to me from this post that Ms. Skloot was in agreement with Dreger's position. But then, I've been reading about this in other places. There's a piece in Newsweek (I think, or maybe Time) calling Dreger's take sensationalistic, overblown, and misleading.
Anyhow, I'm interested in Dreger's assumption that people see more girly/less masculine as corresponding to decreased levels of "uppitiness". It's like "come on, do you even know any women?"
Advocates for Informed Choice is a non-profit organization advocating for the legal and human rights of children with intersex conditions or differences of sex development, like the ones in this story. We work in collaboration with bioethicists, doctors, parents, affected adults, and many others. If you are interested in taking action to help protect these children, and to be sure that possible human rights violations are investigated, please join our Facebook page at http://ow.ly/20wTY or sign up for our Twitter feed at http://twitter.com/aiclegal. You can also donate to support our work at http://aiclegal.org/we-need-your-supportâ¦
- AIC Intern