Июль 6, 2010
|11:53 am - OMG coercive transhumanism?|
(the title of this entry is heavily sarcasticated)
I sincerely hope everybody picked up the flap about medicine to prevent lesbian babies, yes? It has all the necessary elements of a beautiful internet horror show- dishonest doctors experimenting on pregnant women, babies with ambiguous gender, and a medical plot to enforce stepford wives... pure dead brilliant.
Ambiguity in bodily correlates of gender are, basically, irrelevant to most people's lives, including the people who have them. There have always been genitalia that don't fit, for instance, and somehow the human race has soldiered on. There is even supposedly (I can't source this) a hadith about how difficult-to-assign people should pray: with the women, until such a point in their lives when they declare themselves to be men, and from then on only with the men. See? No harm, no foul.
In fact, the definition of ambiguous gender has steadily changed with biotechnology's ability to detect variation in the body. Turner syndrome was no considered a sex/gender issue until someone learned to reliably stain and identify chromosomes- oh look, women with Turner's are short an X chromosome. That's why they're short, broad-necked, "shield chested" and tend to have developmental problems unrelated to genitalia. Now, its a textbook "intersex" condition despite everyone who had it prior to the 1930's being considered, well, some contemporary unpleasant word like "retarded."
Similarly, the other prime textbook example of an intersex condition, Kleinfelter's Syndrome, presents clinically only with an increased risk for infertility, lower cognitive development, and leukemia- the list of possible causes for those symptoms is very, very long. Still, because the "lesion" at the root of Kleinfelter's is an XXY karyotype, something invisible until this century, and because John Money put those willowy naked men with bars over their eyes in his books, Kleinfelter's is considered an intersex condition.
Let me repeat- there have always been people with ambiguous genitalia, male and female, identifying with a complete range of culturally available roles, throughout history. Men have always had hypospadias, women have always found themselves with an elongated clitoris, and basically, we've managed to figure out ways to get by. Its just not that big a deal.
(by the way, before I get on to the meat of the matter, let me give an explicit shout-out to ISNA and others who've pointed out the ways in which cultural attempts to "correct" these ambiguities have been horrible- but as I'll explain in a minute that's a different issue)
Now we get to CAH. CAH is one of those rare things that still happens a lot- about 1 in 16,000 births, or 5,000 women in Philadelphia. CAH is caused by a deficient enzyme in the synthesis pathways for cortisone, that leads to byproducts being dumped into other synthetic pathways and causing, among other things, high testosterone levels regardless of gender. Predictably, girls with CAH tend to be born with ambiguous genitalia. There is some reason to believe that women with CAH are also more likely to be butch or identify as lesbian, but there is also a good suggestion that this is due to the history of CAH advocacy; straight women with CAH (there are plenty) are believed to be less likely to step forward for follow-up studies or even to identify with the condition. One woman (who was gay-identified) told me her best guess was 40% lesbian or bisexual, which is still higher than "gen. pop." but hardly an automatic consequence.
(well, and then there's the question of what percentage of women who want to jump other women identify as lesbian or bisexual- do you see how complicated this gets?)
Unlike the other conditions loosely grouped as "intersex" though, CAH has a life-threatening side effect. Some of the other steroid hormones dumped out by the enzymatically blocked pathway affect mineral balance in the bloodstream, and CAH folks can suffer a "salt wasting syndrome" or an "adrenal crisis" that basically kills them around age three unless treated. Interestingly, without the ambiguous genitalia as a heads-up, boys with CAH are often not detected until this happens.
So, some bright doctor figured out that providing treatment in utero decreases the embryological changes of CAH. Maybe. And, given this side effect (which the drugs may not effect- i.e. babies will need post-natal treatment for salt-wasting either way) they might be right to try to do so. Unfortunately for our hypothetical bright and neutrally-minded doctor, these less-likely-to-experience-adrenal-crisis babies are being born into a culture that freaks the fuck out about ambiguous genitalia. From a consumer perspective, this is a prenatal treatment for ambiguous genitalia.
How you feel about that depends on a lot of interesting questions. Most people on this list (I hope) are rightly horrified by the idea of amputating a clitoris (or excavating a vagina) on a pre-consent infant, or even a slightly-older-but-still-not-legally-competent child. Yikes. The question is, if there were none of the predictable side effects (not having genitalia, for instance) would it still be a problem? Interesting question, isn't it? And definitely something bioethicists and everyone else should feel free to think about.
And that's who Alice Dreger and Ellen K. Feder are. They wrote the paper that got the ball rolling. Most of it concerns bizarrely inappropriate methods for evaluating clitoridectomies by a given doctor, but they also put the word out on dexamethasone as a chemical genital normalizer, and that's where Time magazine and everyone else picked up the story. The concern seems to be that parents would choose prenatal treatment not just for the genitals, but also to avoid the dubious-but-plausible other correlates for adult women with CAH- the masculinity, tendency to date women, and "disinterest in babies, [not playing] with girls' toys or becom[ing] mothers, and whose "career preferences" are deemed too "masculine." By the time Dan Savage at the Seattle Stranger got on board, dex was a drug to create Stepford Wives, and witty commenters were pointing out that the idiot doctor (Maria New- feel free to go harass her) who came closest to advocating this point was herself in a profession atypical for women.
Of course, lets review:
1) Dexamethasone might change the embryologic effects of CAH, which include ambiguous genitals
2) CAH might also be associated with masculinity in adult women, which
3) might be due to embryodevelopmental events
1) most lesbians do not have CAH
2) most women in non-traditional careers are straight (and also don't have CAH) and therefore
3) treating people with dexamethasone won't eliminate masculine or queer women but
4) probably will have side effects.
I am convinced that the FDA's 2005 ban on gay sperm donors had nothing to do with HIV (in 2005?) and everything to do with fear of a gay gene. Or, a gay planet. Despite the fact that most queer people have heterosexual fathers (no, do the math, its true) I'm sure the FDA was imagining nightmare scenarios in which angry fathers shot up IVF clinics because they "made my son a faggot." I put this dexamethasone flap into the same mental file folder- a PR move with human consequences, one that won't accomplish the longstanding unstated goal of normative medicine to "give parents options" about preventing gay people, but will screw up a small number of people's lives.
Which brings me back to the sarcastic title of this entry. Every now and again, someone realizes that the baseline for normal has moved, in the upper classes of America. Are there any students now at MIT who don't use Provigil? How many phone numbers can you remember? The coverall term for this is transhumanism- a sort of conceptual body modification, or "lifehacking," where technology is used to "upgrade" the human experience. So far, the word is primarily attached to Quinn Norton's magnetic implant or what-have you, but every futurist from Bruce Sterling to, crap, Aldous Huxley has gotten in on the action with suggestions for the future.
I believe technology goes through predictable phases: neat engineering hack -> centrally controlled phantasmagoria -> porn -> public platform -> buried platform underlying the next level of technology. By example, social networking is moving from phase four to phase five, video chat is moving from phase three to phase four, imax is moving from phase two to phase three, and augmented reality is moving from phase one to phase two.
So far, transhumanism is stuck in phase one, "neat engineering hack." Everyone builds their own equipment or steals their own prescription or gets their own IRB. You publish, you give a TED talk, you brag to your friends, you show off at tech fairs, conferences, whatever. We can predict, though, that as the techniques get a little more complicated and profitable, the next step will involve more projects like this CAH "prevention"- centrally controlled, socially normative, and highly coercive under the rhetoric of "choice" or "what's best for your children." On the other side, good best practices will filter down to more unscrupulous practitioners and eventually to the general public, but we have a long slog through the superbaby valley before we get there.
Thought number one: dwarves, the deaf, and gay people have all developed creative cultures around traits that a coercive bodyhacking regime would try to eliminate. Lets hang together and watch each other's backs, okay?
Thought number two: ever wonder why people who feel comfortable lecturing each other about how once you do it, you have to accept a baby, are so unwilling to say that once your baby turns out to be gay, you have to accept that?
Thought number three: you know what the harbinger was? Not rogaine or viagra- it was Lamisil. If I'm going to be taking antibiotics for a year, it better be to get rid of malaria or TB. Who really gives a shit about funny-colored toenails anyway? Oh yeah, money to be made...
i read about this shitbag. i really get to sleep at night on the hope that this dr. new and her prognoses go the way of the lobotomy and are remembered for the aberration upon medicine that they are. but i guess i'm just some dumb commie hippie that thinks technological enhancement has a point of diminishing return.
wouldn't a person have to admit that they were capable of producing a queer to ask the doctor for a prescription for this? isn't that admitting defeat? can you imagine that prenatal care visit?
doctor, my first daughter is kinda assertive, should i be worried about CAH?
maybe, let me write you a prescription for this anti-inflamatory steroid.
i don't know, stranger things have been prescribed.
but seriously, where does she get off? what does she have drug stock or something? i mean she comes off like an undercover queer operative trying to make homophobes seem like assholes.
how mainstream would you say her views are among doctors?
> doctor, my first daughter is kinda assertive, should i be worried about CAH?
See, but that's exactly how it doesn't go. That would be like saying "doctor, my first daughter gets sore knees, should I be worried about sickle-cell anemia?" Or, "doctor, my first daughter is a nihilist, should I give her younger sister penicillin in case it was caused by syphillis, like Nietzsche had?"
CAH isn't the secret underlying explanation for masculine or gay women, its a serious adrenal disorder caused by a genetic enzyme variant that might, as a side effect, make some women masculine or gay. Maybe.
What Maria New is saying is that the same drugs that are used after birth to prevent salt-wasting syndrome, if given prenatally, might have an added "benefit" of, for girls with this condition, normalizing genitalia and reducing masculinity to a baseline variation. Nobody has demonstrated this, though- its a guess, and one based on a really poorly studied description of "masculinity" and "baseline." She doesn't advocate giving it out willy-nilly, she gives it to women who know they are pregnant with a CAH+ fetus. You're absolutely right- this is not part of the regular prenatal screen. One of the more cogent arguments against New's whole idea is that at the time fetuses are forming genitalia- nobody knows about gender identity, remember, but we can do genitals- women usually don't even realize they're pregnant, let alone that they and their sperm donor carry the variant-enzyme gene trait.
I'm certainly not going to defend her. She's basically yelling "bonus!" about an extremely marginal phenomenon, that probably isn't real. The fact is, if you have enough information to identify a fetus as CAH+, you can sure as hell have the medications ready after birth, when we know they help keep people alive, even if they don't affect genitals or personalities. Giving them during fetal development isn't going to save any more lives than are already being saved, and people with interesting gender identities or genitalia are hardly a "problem" that needs to be solved. There's no benefit to her plan, and certainly no bonus.
What I am trying to do is dispel some of the weirdly conspiratorial and apocalyptic myths Dan Savage and others are building around this story:
MYTH! #1- CAH is the cause of female masculinity. It isn't. There isn't one cause, and for roughly 15999 out of 16000 women, CAH isn't even a relevant question. What we believe about that last woman who even has the condition is based on assumptions, stereotypes, and guesses about what "seems right," not study.
MYTH! #2- Giving dexamethasone immediately after conception to the pregnant mothers of CAH+ girl fetuses will make them feminine and demur The world is full of assertive, non-traditional butch women who don't have this one unusual genetic condition. Even if you could wipe out the variant trait altogether, some of the "cured" girls would grow up to be butch as fuck, just like some of everyone else. duh.
MYTH! #3- Giving dexamethasone routinely to women pregnant with non-CAH fetuses will make fewer gay babies Nope. For fetuses with a "wild-type" 21-hydroxylase gene (geneticists don't say normal, they say wild-type) dexamethasone has no effect whatsoever, except for the risks and side effects of a steroid during pregnancy. It wouldn't make girls less macho, it wouldn't make boys girly, it wouldn't do anything except raise the risk of infection and maybe some other liver or kidney stuff.
MYTH! #4- Body-hacking and transhumanism are creative, liberating, and completely separate from eugenics and coercive body politics. See, whatever Wired magazine says, this just isn't true.
Oh right, how about it I quit ranting and answer your question? (your comment didn't provoke all the yelling in my last response, by the way, I just carry that around with me...)
> how mainstream would you say her views are among doctors?
I think most doctors would stay way the hell away from her ideas, actually. Doctors like to avoid prenatal medicine, pediatrics, gender- or genital-related ANYTHING, and gayness. Everything she's saying reads to a doctor like the world's worst lawsuit, just waiting to happen, especially after this Time magazine flap. That's my analysis anyway.