Thursday, July 1st, 2010
Over at the Bioethics Forum, a trio of “uppity” women have written an exposé on the research of pediatric endocrinologist Maria New to engineer females in utero to be heterosexual and adhere more closely to female behavioral stereotypes. The article is lengthy and a little science heavy for those of us with a liberal arts education, but it’s absolutely worth reading.
It boils down like this:
New is giving pregnant women the steroid dexamethasone to prevent the development of ambiguous genitalia in girls with congenital adrenal hyperplasia (CAH). CAH is caused when a fetus receives an excess of androgens, and can lead to a number of things besides ambiguous private bits, including rapid childhood growth, delayed puberty and infertility. For all the outcry going on in feminist circles about this, it is I think important to note that CAH is a legitimate disease that can have lasting effects, and it’s important not to brush that under the rug.
However. This all goes astray due largely to motive. New and her partner Heino Meyer-Bahlburg are pointing to these surges of prenatal androgens as having a significant impact on sexual orientation, noting “research has repeatedly shown that about one-third of homosexual women have (modestly) increased levels of androgens” and “findings support a sexual-differentiation perspective involving prenatal androgens on the development of sexual orientation”.
The fun doesn’t stop there, though, and here’s where we start wading into seriously murky waters. Because it turns out these nefarious little androgens don’t just influence sexuality. Follows are two quotes from articles written by New and Meyer-Bahlburg:
“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.”
“Gender-related behaviors, namely childhood play, peer association, career and leisure time preferences in adolescence and adulthood, maternalism, aggression, and sexual orientation become masculinized in [girls and women with CAH]. These abnormalities have been attributed to the effects of excessive prenatal androgen levels on the sexual prenatal androgen levels on the sexual differentiation of the brain and later on behavior. We anticipate that prenatal dexamethasone therapy will reduce the well-documented behavioral masculinization.”
Most telling and troubling is this quote, which New reportedly said during a slideshow presentation/dexamethasone pitch to parents:
“The challenge here is … to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl.”
Read the full article these quotes are pulled from at the Bioethics Forum.
There are several points of fail here, but I want to point out three in particular.
The idea of “preventing gayness” is both horrible and, sadly, unsurprising. It is not medicine or science’s place to alter people to conform to society’s norms, and the extrapolated future world this kind of people-engineering leads to is not a world I want any part of. I am reminded strongly of Scott Westerfeld’s excellent trilogy Uglies, Pretties and Specials where bodies, brains and behavior is fiddled with to smooth out those unsightly “abnormal” wrinkles to make people more socially compliant, “normal” and “happy”. This is not acceptance or tolerance. This is an outright attack on homosexual, bisexual and transexual people’s right to exist.
From Alice Dreger:
“It sends the message that you must conform to the most conservative social norms to count as acceptable and to be allowed to live, with full rights, free of discrimination and abuse in American society. … A democratic medical establishment does not alter people’s bodies to fit regressive social norms; it advocates for patients by demanding the social body get its act together. As a white woman who grew up with a black brother, I can tell you that the solution to my brother’s suffering was not to have his skin bleached and his hair straightened, prenatally or postnatally.”
Read more from Alice Dreger at Psychology Today.
As a woman who is a poster child for “uppity”, I take massive offense at the idea that I am “abnormal” or need “repair”, and as a feminist the idea that females could be engineered to adhere to conservative, sexist, stereotypical housewife and mother roles is beyond enraging. If women want to be wives and mothers, to be quiet and unassuming, to stay at home, cook and take care of babies, then that’s their business. I have no problem with that life. But when people — and most especially female scientists working in traditionally male dominated fields — tell me I am behaviorally broken or wrong, then I am going to throw down and you will see what this arrogant, aggressive, “masculinized”, career-oriented, childless, unmarried female is made of.
This kind of sexist and homophobic thinking is why Supreme Court nominee Elana Kagan has been criticised for ridiculous things like not crossing her legs when she sits and playing softball. And why athlete Caster Semanya’s gender identity was publicly and medically questioned. Kagan and Semanya don’t fit neatly into society’s definition of what it means to be and look female, so we parade them around and label them as “abnormal freaks”.
These women are not broken and neither am I. We do not need to be fixed, most especially before we have developed our own gender identities and personalities. When parents start trying to customize their unborn baby’s behavior and cosmetic physical appearance to sooth their own heteronormative and gender binary biases, science and society has strayed into unethical waters.
The thing not enough people are talking about when it comes to New’s research and the clitoral surgeries going on at Cornell University is the dubious medicine and science going on here.
In the Cornell case, Maggie Koerth-Baker notes on BoingBoing these are purely aesthetic surgeries that can and often do have well-documented life-long side-effects, performed when patients are infants and cannot consent, and are mostly to placate parental discomfort and “fix” female babies so they conform with societal physical norms.
“There’s been no research on outcomes for intersex adults, but there have been lots of intersex adults who’ve spoken up about being miserable with the results of childhood surgeries. Realistically, there are probably people who are happy with their surgeries, too. But, with the evidence we have, all we can say for sure is that there’s no guarantee surgery is the right way to go, psychologically, for each individual. Meanwhile, the standard practice is to not offer individual choice.
I’m going to go out on a limb and call that wrong. But this isn’t just oppressive to people who don’t fit a neat gender binary. It’s also not scientific medicine.
I love modern medicine. The skeptic movement has turned me into an advocate of evidence-based medicine — the simple idea that tradition, anecdote and common sense aren’t good enough reasons to ask a patient to spend money and risk side-effects on a treatment. If there’s no solid, scientific evidence, what you’re doing isn’t medicine.”
Read the full article by Maggie Koerth-Baker on BoingBoing.
I couldn’t agree with this more. When legitimate science and medicinal techniques are wielded against people unable to consent for wibbly justifications of comfort, abstract potential unproven future psychological gain, and society’s physical aesthetics, it ceases to be legitimate science or medicine at all. The literature suggests there is no evidence or medical justification for this kind of surgery on infants, so why is it being done?
When it comes to New’s research with dexamethasone, Dreger reminds us the research being done is not conforming to standard clinical trial procedures. Women are not being fully informed of the risks, and Dr. New has come under fire repeatedly from multiple medical societies for her methods and poorly controlled trials.
From a letter from Alice Dreger to the CARES Foundation which promotes prenatal dexamethasone:
“There are also important scientific questions raised by what appears to have been such a poorly controlled trial. If these studies were not run as real scientific trials from the start, as they should have been, then it is very hard to know what really happened during the pregnancies in which women were administered dexamethasone.
We are also very concerned by the disjuncture between what Dr. New advertises on her Foundation’s website (“Dr. New maintains contact with all children treated prenatally”) and the substantial number of patients missing from the follow-up studies on which she is a coauthor. Dr. New has made the same claim about continuity of contact with all patients to the CARES Foundation, even though her studies suggest otherwise.
Studies of prenatal dexamethasone give us substantial reason for concern for these mothers’ and children’s physical and mental well-being, particularly given that this usage is aimed at preventing a cosmetic issue (one not even shown to increase a girl’s psychosocial risk) and that 87.5% of the mothers started on prenatal dexamethasone will not even be carrying a fetus that is 46,XX 21-hydroxylase deficient. As mentioned earlier, studies have already shown some concerning adverse effects on exposed children.”
Read the full letter to CARES.
This whole thing is surrounded by fuzzy medical science and motivated by reasons other than the health and wellbeing of mothers and children. Evidence-based medicine this ain’t, and that part needs to be talked about more.