Thursday, July 1, 2010

Medical "ethics": Curing lesbians and cutting up little girls

The blogs are abuzz with a recent article in the Bioethics forum, describing an "off label" usage of the drug dexamethasone ("dex"). Congenital Adrenal Hyperplasia (CAH) is a condition that results from excessive exposure to androgens in developing female fetuses that can lead to intersex morphologies and other health problems. Some physicians have treated this with dex, although a variety of professional bodies consider this a potentially dangerous, experimental treatment that should only be done with rigorous review and follow up. (More in this Time article).

The article in Bioethics Forum describes one researcher who is doing unsupervised administrations of this drug essentially to "cure lesbianism". It's less the physical aspects of CAH that she's targeting, than the behavioral ones. She is very deliberately targeting behavior and orientation rather than the physical manifestations of CAH, and THAT is why everyone is concerned.
Pediatric endocrinologist Maria New, of Mount Sinai School of Medicine and Florida International University, and her long-time collaborator, psychologist Heino F. L. Meyer-Bahlburg, of Columbia University, have been tracing evidence for the influence of prenatal androgens in sexual orientation. ...

And it isn’t just that many women with CAH have a lower interest, compared to other women, in having sex with men. In another paper ... Meyer-Bahlburg 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.”

In the same article, Meyer-Bahlburg suggests that treatments with prenatal dexamethasone might cause these girls’ behavior to be closer to the expectation of heterosexual norm....

In a paper published just this year in the Annals of the New York Academy of Sciences, New and her colleague, pediatric endocrinologist Saroj Nimkarn of Weill Cornell Medical College, go 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...
(emphases mine)By pathologizing women who aren't interested in babies, or who are interested in men's jobs (like scientist or doctor?) these physicians are invoking a "Handmaid's Tale" view that would put women back, walking 3 steps behind the men.

There are real concerns with this. From the Time article:
Perhaps most controversially, prenatal dex must be given as soon as a woman learns she is pregnant, which is usually several weeks before genetic tests can determine if the fetus is in fact a female affected with CAH — the chance of which is 1 in 8 for parents who already have an affected child or know they are carriers of the genetic disorder. If the baby is healthy, treatment is stopped, but at that point, the fetus has been exposed to the steroid drug for weeks. There is no data on how many mothers receive prenatal dex, but according to the odds, 7 of 8 may be taking medication unnecessarily.

I am a lesbian. I never wanted children, I was a tomboy who preferred toy cars to baby dolls, and I work in a "man's profession" as a science professor. I'm certainly not a sufferer of CAH; my body isn't at all "masculinized" (quite the opposite! ;-) but at some level, I am the sort of person this "treatment" is intended to eliminate. Who I am is considered a pathology by this "doctor".

From this, I point out another Bioethics post on female genital mutilation on CAH patients. Seems there's another pediatrician in New York who makes a living "cutting down" the clitorises of little girls who are deemed to be "over-endowed". Not that there is anything really WRONG with them, just a somewhat larger than average clitoris, but there is discomfort from their parents that they are different and a physician who "recommends" amputation. Many medical professionals decry these surgeries as unnecessary. Again, with no institutional research subject approval,
At annual visits after the surgery, while a parent watches, Poppas touches the daughter’s surgically shortened clitoris with a cotton-tip applicator and/or with a “vibratory device,” and the girl is asked to report to Poppas how strongly she feels him touching her clitoris. ....Poppas has indicated in this article and elsewhere that ideally he seeks to conduct annual exams with these girls. He intends to chart the development of their sexual sensation over time........Ken Zucker, a psychologist [said]"Applying a vibrator to a six-year-old girl’s surgically feminized clitoris is developmentally inappropriate." "
What sort of parent lets a doctor do that to her little girl?

What all of this boils down to is not simple heterosexism. It's also fear of all women's sexuality, gay or straight, and it attempts to pathologize any female who doesn't fit a rigid gender binary of traditional sex roles. It's absolutely offensive to me that any "physician" would justify these "treatments" which are not based on the needs or desires of the young patient, but on the fears and biases of their parents or of the physicians themselves. I hope the institutional review boards (IRB) go after these doctors, and I hope that patient advocates consider bringing suits for medical abuse.

What this also shows us is that even if the bad guys are forced to admit being gay is not a choice, but a biological fact, we are still deeply endangered by their efforts to turn us into a pathology to be eliminated, or a variant to be cured.


NancyP said...

Truly dastardly docs doing these things - disobeying the wisdom, "First, do no harm", as well as other ethics. They are also simplistic. I was a doll dumper (went into the toy box, never seen again) tomboy nature enthusiast, and am now intentionally childless, lesbian, work in a "man's profession" (academic medicine) - and am a physiologically and anatomically completely average woman.

A note on the process of change within the medical profession:

Historically, the majority attitude of specialty physicians caring for patients with atypical development of genitalia / gonads (as opposed to GPs and general pediatricians*) had been ""fix" the genitals to look normal". A lot of the specialist attitudes were derived from psychoanalytic thought and the work of the Hopkins group with John Money. The theses were that "correct" gender identity depended solely on gender role modeling and gender role prescription by parents and on the "normal" appearance of external genitalia. Money believed that prenatal biology did not play a role in gender identity. His most famous patient was the unfortunate boy (can't remember name) who had his penis amputated by an incompetent surgeon. Money advised the parents to raise the child as female, but the patient ditched that role in adulthood and reclaimed male identity. Since there was little long-term followup being done, it took a while for the specialists to acknowledge the possibility that a large percentage of patients could be harmed. Docs strongly committed to a procedure or therapy often dismiss adverse case reports as merely outliers - human nature.

The specialists of that generation shared the physician's authoritarian attitude, the knowledge current when they were in training and early practice, and wider social attitudes about the need to preserve highly differentiated gender presentations and roles of men and women, with women seen as the inferior sex.

Doctors' professional presentation and attitudes tend to be crystallized in the early part of their careers. The knowledge base is changed more easily than professional personality.

Second wave feminism transformed the predominant professional attitudes among younger physicians, starting with the cohorts starting medical school in 1975 to 1980, when the percentage of women medical students rose from 5% to a critical mass of 20% or more. Women patients also became more assertive, and since women drove and drive the medical market (women are the ones overseeing their children's health and the health of their male husbands), young docs adapted to be less authoritarian and often more informative. The trend is continuing, so the majority of students, practitioners, and leaders now have a strong "patient's rights" norm. I think that the tipping point of the profession as a whole was somewhere around 2000. The intersex rights movement started around 2000 as well, and specialty norms considering external genitalia appearance has shifted very rapidly.

*(GPs generally didn't and don't care unless the parent makes a fuss or there is an obvious related problem such as precocious puberty (leading to closure of the long bone growth plates) or a need to move an abdominal or groin testis if it hasn't descended by early toddlerhood.)

JCF said...

[I saw your comment, IT, at D Savage's!]

See in context of this article, "The End of Men", and maybe we're seeing Patriarchy in a PANIC!

JCF, who was also uninterested in babies when young, and not interested in them enough as an adult to change what/who I am to have one. And what I am is a woman-loving (I wish!) Gender-Queer.

IT said...

David Reimer was the boy, Nancy P. Thanks for your insights. My perspective is similar....though I admit to being surprised that it is a WOMAN doing this.

Erika Baker said...

Is this legal? Don't you have laws covering medical ethics?

I'm also shocked by the use of dex on foetuses, there is simply too little known about the long term side effects of dex on children, never mind on developing foetuses to make that ethically acceptable.

IT said...

technically physicians are allowed some latitude in the prescription of legal drugs. However, anything that approaches a "study" or "experimental protocol" is supposed to be rigorously reviewed by an Institutional Review Board, or IRB. Regardless of whether it is a study, patients are supposed to be given explicit information, and must give their signed consent.

In the US, caveat emptor really applies. The Time article I linked has more information about Dr New. It sounds like she is really NOT telling her patients all the details about this experimental treatment, and she has been chastised by several professional bodies for her use of this drug.

Hopefully getting the information into the press will help inform any future patients and they will think twice.

NancyP gives us good information. But the concept of "first do no harm" often seems ignored in controversial treatments where the physician him/herself is a "true believer".

Erika Baker said...

Cavet Emptor applies in medical settings where the patient has no choice but to trust doctors?
That's shocking.
I thought in a country so known for people sueing each other much more readily than they would in Europe, everything would be completely legally watertight and doctors wouldn't leave themselves open to the charge of having witheld vital information?

IT said...

You'd think, Erika. You'd think.

NancyP said...

Malpractice suits get made when a lawyer, working for a percentage of the award or settlement, deems a case potentially winnable. Making girls "feminine" is going to be popular with juries, and getting juries to take cases seriously would be tough. Furthermore, pursuing a suit is strenuous and strips the plaintiff of privacy. This is even more of a problem in the Internet age, where court records are routinely obtained on googling simply a name.

I would guess that the endocrinologists and surgeons involved don't see their malpractice risk as any higher than their peers who don't treat intersex characteristics of intersex patients.