"The off-label intervention ... aims only at sex normalization".
August 5, 2012 7:04 PM Subscribe
From the Northwestern University press release: A new paper just published in the Journal of Bioethical Inquiry uses extensive Freedom of Information Act findings to detail an extremely troubling off-label medical intervention employed in the U.S. on pregnant women to intentionally engineer the development of their fetuses for sex normalization purposes.
The new report provides clear evidence that:
The new report provides clear evidence that:
- [...] Clinician proponents of the intervention have been interested in whether the intervention can reduce rates of tomboyism, lesbianism and bisexuality, characteristics they have termed "behavioral masculinization."
- The National Institutes of Health has funded research to see if these attempts to prevent "behavioral masculinization" with prenatal dexamethasone are "successful."
- The United States’ systems designed to prevent another tragedy like DES and thalidomide -- involving de facto experimentation on pregnant women and their fetuses -- appear to be broken and ineffectual.
One of the many things wrong about this:
Mothers offered the intervention have been told it “has been found safe for mother and child” but in fact there has never been any such scientific evidence.
The U.S. Food and Drug Administration has indicated it cannot stop advertising of this off-label use as “safe for mother and child” because the advertising is done by a clinician not affiliated with the drug maker.
posted by bq at 7:17 PM on August 5, 2012 [3 favorites]
Mothers offered the intervention have been told it “has been found safe for mother and child” but in fact there has never been any such scientific evidence.
The U.S. Food and Drug Administration has indicated it cannot stop advertising of this off-label use as “safe for mother and child” because the advertising is done by a clinician not affiliated with the drug maker.
posted by bq at 7:17 PM on August 5, 2012 [3 favorites]
*sigh*
You know who else liked eugenics?
I can't understand the paper, so I'm not going to try. But some quick scouting around suggests that the paper's author, Alice Dreger, may or may nothave an axe to grind on this topic since apparently she is "someone whose trade is writing and speaking about controversies surrounding marginalized populations."
Nothing I have found suggests that this is fabricated, but it's worth keeping in mind, although I think the real issue here is - if proven - something is seriously fucked up somewhere.
posted by Mezentian at 7:19 PM on August 5, 2012 [1 favorite]
You know who else liked eugenics?
I can't understand the paper, so I'm not going to try. But some quick scouting around suggests that the paper's author, Alice Dreger, may or may nothave an axe to grind on this topic since apparently she is "someone whose trade is writing and speaking about controversies surrounding marginalized populations."
Nothing I have found suggests that this is fabricated, but it's worth keeping in mind, although I think the real issue here is - if proven - something is seriously fucked up somewhere.
posted by Mezentian at 7:19 PM on August 5, 2012 [1 favorite]
My god, if this is true, it is criminal.
posted by likeso at 7:26 PM on August 5, 2012 [6 favorites]
The pregnant women targeted are at risk for having a child born with the condition congenital adrenal hyperplasia (CAH), an endocrinological condition that can result in female fetuses being born with intersex or more male-typical genitals and brains. Women genetically identified as being at risk are given dexamethasone, a synthetic steroid, off-label starting as early as week five of the first trimester to try to “normalize” the development of those fetuses, which are female and CAH-affected. Because the drug must be administered before doctors can know if the fetus is female or CAH-affected, only one in eight of those exposed are the target type of fetus.And what bq quoted above and:
A just-out report from Sweden in the Journal of Clinical Endocrinology and Metabolism documents a nearly 20 percent “serious adverse event” rate among the children exposed in utero.And funded by the NIH. Your tax dollars at work.
posted by likeso at 7:26 PM on August 5, 2012 [6 favorites]
It sounds like the authors are pretty open about their approach:
We come to this work as history, philosophy, and legal scholars interested in the medical treatment of children with atypical sex, but also as women who have long advocated clinical reform in this general area. Late in 2009, clinicians working in the pediatric care of children born with sex anomalies made one of us (Dreger) aware of their growing alarm about prenatal dexamethasone for CAH. These clinicians were concerned that pregnant women at risk for having daughters with CAH were being given prenatal dexamethasone without being informed that (a) this use has consistently been labeled experimental by expert panels; (b) benefits and risks have not been established, due to inadequate scientific study; and (c) some children who had been exposed in utero were being studied retrospectively, in many cases years later, by the very clinicians who had been (and were still) actively promoting the use to pregnant women as “safe for mother and child,” to find out what the risks might really be.
I have nothing to say except holy fucking shit these sorts of shenanigans are exactly why I want to go into biomedical anthropology.
posted by WidgetAlley at 7:29 PM on August 5, 2012 [1 favorite]
We come to this work as history, philosophy, and legal scholars interested in the medical treatment of children with atypical sex, but also as women who have long advocated clinical reform in this general area. Late in 2009, clinicians working in the pediatric care of children born with sex anomalies made one of us (Dreger) aware of their growing alarm about prenatal dexamethasone for CAH. These clinicians were concerned that pregnant women at risk for having daughters with CAH were being given prenatal dexamethasone without being informed that (a) this use has consistently been labeled experimental by expert panels; (b) benefits and risks have not been established, due to inadequate scientific study; and (c) some children who had been exposed in utero were being studied retrospectively, in many cases years later, by the very clinicians who had been (and were still) actively promoting the use to pregnant women as “safe for mother and child,” to find out what the risks might really be.
I have nothing to say except holy fucking shit these sorts of shenanigans are exactly why I want to go into biomedical anthropology.
posted by WidgetAlley at 7:29 PM on August 5, 2012 [1 favorite]
You know who else liked eugenics?
Unfortunately, the answer to that is "A lot more people than you realize."
posted by mhoye at 7:29 PM on August 5, 2012 [3 favorites]
Unfortunately, the answer to that is "A lot more people than you realize."
posted by mhoye at 7:29 PM on August 5, 2012 [3 favorites]
Imagine for a moment having your kid "treated" in utero to control her behavior, and spending the rest of your life wondering who they would've been, rather than the person they became. Imagine, every time your child makes a mistake or fails, wondering if it was because you got that treatment.
posted by Pope Guilty at 7:31 PM on August 5, 2012 [9 favorites]
posted by Pope Guilty at 7:31 PM on August 5, 2012 [9 favorites]
This is Maria New's entry on the Endocrinel Society's website.
posted by likeso at 7:34 PM on August 5, 2012
posted by likeso at 7:34 PM on August 5, 2012
I just spent an entire day being productive and happy, but now I can breathe a sigh of dreadful anticipation knowing I have something to lose sleep over and freak out about all night long. Thanks, MetaFilter!
posted by byanyothername at 7:44 PM on August 5, 2012 [3 favorites]
posted by byanyothername at 7:44 PM on August 5, 2012 [3 favorites]
What woman would submit herself and her fetus to this kind of experimentation?
One who lives in a society that increasingly persecutes and lies to her about sexual health and reproductive rights, sending her the message that she is only valued as breed stock?
posted by samofidelis at 7:48 PM on August 5, 2012 [2 favorites]
One who lives in a society that increasingly persecutes and lies to her about sexual health and reproductive rights, sending her the message that she is only valued as breed stock?
posted by samofidelis at 7:48 PM on August 5, 2012 [2 favorites]
Who the fuck thought this was a good idea? If I were King, heads would be rolling right about now. Jesus fuck this is Not OK.
posted by Scientist at 7:55 PM on August 5, 2012 [1 favorite]
posted by Scientist at 7:55 PM on August 5, 2012 [1 favorite]
The wikipedia entry for congenital adrenal hyperplasia makes no mention of "behavioral masculinization".
I was a tomboy. And what the hell, classifying lesbianism as a "symptom". Medical deviancy now?
posted by likeso at 7:58 PM on August 5, 2012 [6 favorites]
I was a tomboy. And what the hell, classifying lesbianism as a "symptom". Medical deviancy now?
posted by likeso at 7:58 PM on August 5, 2012 [6 favorites]
Well, that wikipedia entry is missing stuff then, because there's a definite behavioral masculinization component to CAH. You see it in children's drawings, where by the age of (5 or so? I may be mis-remembering) there is a pronounced sex difference in subject matter and style. If you line up drawings from CAH girls with girls and boys with typical development, the CAH girls' drawings will look a lot more like the boys ones.
As one example.
Anyway, this is just insane.
posted by gaspode at 8:13 PM on August 5, 2012 [1 favorite]
As one example.
Anyway, this is just insane.
posted by gaspode at 8:13 PM on August 5, 2012 [1 favorite]
But the whole "to prevent tomboyism" thing... THAT is where my outrage springs from.
As it is supposed to. Well, that and lesbianism.
Reading the original paper it appears that the only references to tomboyism and lesbianism are to a single 1997 paper. (this is out of hundreds of references).
It makes a great pullquote though, doesn't it?
posted by Tell Me No Lies at 8:15 PM on August 5, 2012 [2 favorites]
As it is supposed to. Well, that and lesbianism.
Reading the original paper it appears that the only references to tomboyism and lesbianism are to a single 1997 paper. (this is out of hundreds of references).
It makes a great pullquote though, doesn't it?
posted by Tell Me No Lies at 8:15 PM on August 5, 2012 [2 favorites]
Here's a link to one study showing what I said above.
I'm not really up on the literature as it stands (the ref is 10 years old). I just remembered it because I was at the conference in which the data was presented. I do remember that the drawing thing was a pretty well known phenomenon, though.
posted by gaspode at 8:15 PM on August 5, 2012 [3 favorites]
I'm not really up on the literature as it stands (the ref is 10 years old). I just remembered it because I was at the conference in which the data was presented. I do remember that the drawing thing was a pretty well known phenomenon, though.
posted by gaspode at 8:15 PM on August 5, 2012 [3 favorites]
Could someone tell me if this is really actually a real thing, and not some kind of misunderstanding or elaborate hoax?
I'm not joking, I don't have time to do a ton of reading on this right now, but I would really like to know if this is real. Are doctors actually pushing experimental drugs on pregnant women to make their daughters less masculine? Is the NIH actually funding studies of this so-called treatment?
posted by medusa at 8:29 PM on August 5, 2012 [1 favorite]
I'm not joking, I don't have time to do a ton of reading on this right now, but I would really like to know if this is real. Are doctors actually pushing experimental drugs on pregnant women to make their daughters less masculine? Is the NIH actually funding studies of this so-called treatment?
posted by medusa at 8:29 PM on August 5, 2012 [1 favorite]
Also, one of the authors on the paper is the driving force behind Americans For Informed Choice.
It's kind of a shame the Northwestern article went straight for the outrage, as the issue raised by Americans for Informed Choice is actually thought provoking.
posted by Tell Me No Lies at 8:32 PM on August 5, 2012
It's kind of a shame the Northwestern article went straight for the outrage, as the issue raised by Americans for Informed Choice is actually thought provoking.
posted by Tell Me No Lies at 8:32 PM on August 5, 2012
But aren't there a few more studies are referenced in the second link?
posted by likeso at 8:36 PM on August 5, 2012 [2 favorites]
Studies have shown that girls with 21-OHD CAH exhibit increased rates of what clinicians call “behavioral masculinization,” i.e., behaviors that are more male-typical. These girls are, on average, more interested in boy-typical play, hobbies, and subjects than non-affected females, less interested in becoming mothers, and more likely to grow up to be lesbian or bisexual (Meyer-Bahlburg 1999; Meyer-Bahlburg et al. 2006). The rate of adult identification as male is significantly higher in this group than in the general population of people with an XX karyotype; clinician-researchers report that about 5 percent of CAH-affected genetic-females may ultimately self-identify as male (Dessens, Slijper, and Drop 2005). For this reason, some clinicians have considered recommending raising highly virilized 46,XX CAH-affected babies as boys (Lee and Houk 2010; cf. Eder 2011).And then there are quotes from Maria New weighing in, describing the undesirable behavior masculinization and the desirability of all female children growing up wanting to have children in a heterosexual relationship.
posted by likeso at 8:36 PM on August 5, 2012 [2 favorites]
I found a Time article, and something else by the authors here, so it looks like it's not a misunderstanding, nor is it a hoax.
I'm not used to reading medical guff, and my eyes tend to glaze over on Intersex issues more often than not, but I did note in Time that these trials may also not involve informed consent from the pregnant mothers.
But it's okay, the Maria New Children's Hormone Foundation has found it safe for mother and child assuming that is the same thing.
Maria New has a website but it seems to be down.
Smarter people than I might be able to unpack the science stuff.
posted by Mezentian at 8:43 PM on August 5, 2012
I'm not used to reading medical guff, and my eyes tend to glaze over on Intersex issues more often than not, but I did note in Time that these trials may also not involve informed consent from the pregnant mothers.
But it's okay, the Maria New Children's Hormone Foundation has found it safe for mother and child assuming that is the same thing.
Maria New has a website but it seems to be down.
Smarter people than I might be able to unpack the science stuff.
posted by Mezentian at 8:43 PM on August 5, 2012
Are doctors actually pushing experimental drugs on pregnant women to make their daughters less masculine?
If you mean "less masculine" in the sense of "not having ambiguous genitalia" then yes. Ambiguous genitalia is currently considered a birth defect.
And yes, the NIH is funding studies of the treatments.
The lesbian and tomboyism stuff appears to be entirely for shock value, as it is a single reference to a minor paper.
posted by Tell Me No Lies at 8:44 PM on August 5, 2012 [5 favorites]
If you mean "less masculine" in the sense of "not having ambiguous genitalia" then yes. Ambiguous genitalia is currently considered a birth defect.
And yes, the NIH is funding studies of the treatments.
The lesbian and tomboyism stuff appears to be entirely for shock value, as it is a single reference to a minor paper.
posted by Tell Me No Lies at 8:44 PM on August 5, 2012 [5 favorites]
I'm not so sure. I found this io9 article which talks about a 2010 paper in the Annals of the New York Academy of Sciences, New and pediatric endocrinologist Saroj Nimkarn about how dex can reduce "well-documented behavioral masculinization".
So, while the lesbian and tomboyism stuff may be the pull quote for shock, there's obviously a lot more going on behind the scenes.
posted by Mezentian at 8:50 PM on August 5, 2012
So, while the lesbian and tomboyism stuff may be the pull quote for shock, there's obviously a lot more going on behind the scenes.
posted by Mezentian at 8:50 PM on August 5, 2012
issue raised by Americans for Informed Choice is actually thought provoking.
So yeah, let's go for it.
Splitting sexes down the middle can't be good when it comes to a person's ability to conceive a child down the road.
How would it be moral or desirable to *not* intervene and give a shot at fertility? When they grow up they can make all the choices available to humans: breed or not breed, choose a gender or choose none, sleep with whom they like.
To use a more neutral example, if you had a way to prevent your child from being born with a club foot shouldn't you take it? If they're resentful about their identity being stolen they can get surgery later.
Obviously nothing is this simple when it comes gender and reproductive rights, but I'm kinda curious what others might think.
posted by Tell Me No Lies at 8:58 PM on August 5, 2012 [2 favorites]
So yeah, let's go for it.
Splitting sexes down the middle can't be good when it comes to a person's ability to conceive a child down the road.
How would it be moral or desirable to *not* intervene and give a shot at fertility? When they grow up they can make all the choices available to humans: breed or not breed, choose a gender or choose none, sleep with whom they like.
To use a more neutral example, if you had a way to prevent your child from being born with a club foot shouldn't you take it? If they're resentful about their identity being stolen they can get surgery later.
Obviously nothing is this simple when it comes gender and reproductive rights, but I'm kinda curious what others might think.
posted by Tell Me No Lies at 8:58 PM on August 5, 2012 [2 favorites]
The title of an earlier NW entry on the subject: Clinicians Attempt to Prenatally Prevent Homosexuality.
(Btw, I just went to Northwestern's site by typing it in cold, not using the link, but I can only find these articles by using the search bar. Other Newscenter articles are /archives, while these two are /stories. Can anyone else find them in the menus or contents?)
posted by likeso at 8:59 PM on August 5, 2012
(Btw, I just went to Northwestern's site by typing it in cold, not using the link, but I can only find these articles by using the search bar. Other Newscenter articles are /archives, while these two are /stories. Can anyone else find them in the menus or contents?)
posted by likeso at 8:59 PM on August 5, 2012
Splitting sexes down the middle can't be good when it comes to a person's ability to conceive a child down the road.
How would it be moral or desirable to *not* intervene and give a shot at fertility? When they grow up they can make all the choices available to humans: breed or not breed, choose a gender or choose none, sleep with whom they like.
"For most females who are adequately treated, menses are normal after menarche and pregnancy is possible."
posted by vorfeed at 9:19 PM on August 5, 2012 [1 favorite]
How would it be moral or desirable to *not* intervene and give a shot at fertility? When they grow up they can make all the choices available to humans: breed or not breed, choose a gender or choose none, sleep with whom they like.
"For most females who are adequately treated, menses are normal after menarche and pregnancy is possible."
posted by vorfeed at 9:19 PM on August 5, 2012 [1 favorite]
Unfortunately the rest of that paragraph re-opens the can of worms:
"Overall fertility rates, however, are reported to be low. Reported reasons include inadequate vaginal introitus leading to unsatisfactory intercourse, pain with vaginal penetration [], elevated androgens leading to ovarian dysfunction, and psychosexual behaviors around gender identity and selection of sexual partner(s)."
Even ignoring the last two that's not a life I'd wish on someone.
posted by Tell Me No Lies at 9:47 PM on August 5, 2012
"Overall fertility rates, however, are reported to be low. Reported reasons include inadequate vaginal introitus leading to unsatisfactory intercourse, pain with vaginal penetration [], elevated androgens leading to ovarian dysfunction, and psychosexual behaviors around gender identity and selection of sexual partner(s)."
Even ignoring the last two that's not a life I'd wish on someone.
posted by Tell Me No Lies at 9:47 PM on August 5, 2012
Pain during vaginal penetration is not all that unusual for women (and hey, "if they're resentful about it they can get surgery later", right?)
At any rate, my point was simply that this condition doesn't prevent pregnancy. These women do have "a shot at fertility".
posted by vorfeed at 10:04 PM on August 5, 2012
At any rate, my point was simply that this condition doesn't prevent pregnancy. These women do have "a shot at fertility".
posted by vorfeed at 10:04 PM on August 5, 2012
Ad aan intersex person, I must disagree that while we must abhor attempts to intervene prenatally to prevent girls from being born with a propensity toward tomboyishness or lesbianism, preventing people from being born intersex is reasonable and good. There's nothing life-threatening about being born intermediately sexed; it's just a bodily status that Western society today stigmatizes and attempts to eliminate medically, via selective abortion or childhood sex reassignment surgery.
Eugenics is indeed live and well; in Australia, statistics show a 90% decrease in the birth of XX CAH children since it became possible to detect this status prenatally. The intersex community is hardly the only group to see such a decrease in live births--selective abortion of pregnancies involving Down syndrome, spina bifida, and many other "conditions" have significantly reduced the number of children born with many physical status that are today deemed "defects." Whatever one's position on abortion, I'd hope people would understand how those of us who live in bodies deemed imperfect feel insulted and harmed by the medical counseling that it is reasonable to believe that would be better that people like us were never born, justifying a late-term abortion.
The fetuses being "treated" off-label with prenatal dexamethazone, based on the possibility that they might be sex or gender variant XX CAH kids, are being exposed to an apparent 20% risk of serious adverse event--the same risk rate faced by infants who are exposed to thalidomide in utero (though the consequences are different). It's appalling to me that the NIH would fund a study under these circumstances.
posted by DrMew at 10:10 PM on August 5, 2012 [9 favorites]
Eugenics is indeed live and well; in Australia, statistics show a 90% decrease in the birth of XX CAH children since it became possible to detect this status prenatally. The intersex community is hardly the only group to see such a decrease in live births--selective abortion of pregnancies involving Down syndrome, spina bifida, and many other "conditions" have significantly reduced the number of children born with many physical status that are today deemed "defects." Whatever one's position on abortion, I'd hope people would understand how those of us who live in bodies deemed imperfect feel insulted and harmed by the medical counseling that it is reasonable to believe that would be better that people like us were never born, justifying a late-term abortion.
The fetuses being "treated" off-label with prenatal dexamethazone, based on the possibility that they might be sex or gender variant XX CAH kids, are being exposed to an apparent 20% risk of serious adverse event--the same risk rate faced by infants who are exposed to thalidomide in utero (though the consequences are different). It's appalling to me that the NIH would fund a study under these circumstances.
posted by DrMew at 10:10 PM on August 5, 2012 [9 favorites]
To elaborate: there are plenty of things couples can do together that don't involve vaginal penetration, and there are also ways for women to conceive without it. I don't think being unable to enjoy penetrative vaginal sex equates to "not a life I'd wish on someone" -- not by a long shot. These particular symptoms are well within the range of non-pathological female experience.
posted by vorfeed at 10:20 PM on August 5, 2012 [5 favorites]
posted by vorfeed at 10:20 PM on August 5, 2012 [5 favorites]
If they're resentful about their identity being stolen they can get surgery later.
Must be nice to be you, and to have always been you.
posted by tzikeh at 10:26 PM on August 5, 2012 [2 favorites]
Must be nice to be you, and to have always been you.
posted by tzikeh at 10:26 PM on August 5, 2012 [2 favorites]
" I'd hope people would understand how those of us who live in bodies deemed imperfect feel insulted and harmed by the medical counseling that it is reasonable to believe that would be better that people like us were never born, justifying a late-term abortion."
I can understand feeling insulted and harmed, however the whole "never been born" thing is a pretty inflammatory framing for something that's a personal choice.
It's entirely fair for a couple to take into account things like the impact that special needs children would have on their life, and to recognize that this is higher than the already high cost of children. If it's entirely fine for a woman to have an abortion with a child who isn't special needs — and it is — it's just as OK to abort under other circumstances.
I don't have a lot of experience with intersex folks, and my guess is that the impact isn't nearly as high as with Down syndrome kids or even spinal bifida, but even as it may speak to ugly social prejudice, there's no real way to start arguing which abortions are legitimate without both validating some pretty terrible assumptions and getting into really ethically sticky territory really quickly.
posted by klangklangston at 11:23 PM on August 5, 2012 [3 favorites]
I can understand feeling insulted and harmed, however the whole "never been born" thing is a pretty inflammatory framing for something that's a personal choice.
It's entirely fair for a couple to take into account things like the impact that special needs children would have on their life, and to recognize that this is higher than the already high cost of children. If it's entirely fine for a woman to have an abortion with a child who isn't special needs — and it is — it's just as OK to abort under other circumstances.
I don't have a lot of experience with intersex folks, and my guess is that the impact isn't nearly as high as with Down syndrome kids or even spinal bifida, but even as it may speak to ugly social prejudice, there's no real way to start arguing which abortions are legitimate without both validating some pretty terrible assumptions and getting into really ethically sticky territory really quickly.
posted by klangklangston at 11:23 PM on August 5, 2012 [3 favorites]
Must be nice to be you, and to have always been you.
I have always been me, even when my body has not reflected that.
posted by Tell Me No Lies at 11:43 PM on August 5, 2012 [2 favorites]
I have always been me, even when my body has not reflected that.
posted by Tell Me No Lies at 11:43 PM on August 5, 2012 [2 favorites]
I can't understand the paper, so I'm not going to try. But some quick scouting around suggests that the paper's author, Alice Dreger, may or may nothave an axe to grind on this topic since apparently she is "someone whose trade is writing and speaking about controversies surrounding marginalized populations."
Well, it's people who are interested in this kind of issue already who are likely to go to the trouble of producing a paper -- if they didn't, who else would? Also, that source on her looks a bit . . . um . . . iffy.
Anyhow, I think the main thrust of the paper is less the fact that mothers were being offered a procedure to try to prevent "virilization" than the fact that oversight, followup, informed consent and all that good clinical stuff has been horribly overlooked, possibly out of some idea that this is all so obviously good for the child, why slow it down with basic researching ethics?
posted by ostro at 12:59 AM on August 6, 2012
Well, it's people who are interested in this kind of issue already who are likely to go to the trouble of producing a paper -- if they didn't, who else would? Also, that source on her looks a bit . . . um . . . iffy.
Anyhow, I think the main thrust of the paper is less the fact that mothers were being offered a procedure to try to prevent "virilization" than the fact that oversight, followup, informed consent and all that good clinical stuff has been horribly overlooked, possibly out of some idea that this is all so obviously good for the child, why slow it down with basic researching ethics?
posted by ostro at 12:59 AM on August 6, 2012
I have read two studies of the effect of DEX on children's psychological development -- the Meyer-Bahlberg (2012) study (by the research group that the article in the OP focuses on), and the Hirvikoski (2007) one (by a Swedish research group). The former study found no evidence dispositive of the hypothesis under test, viz. whether DEX treatment affects the psychological development of chldren; the latter found clearly noticeable differences on some specific measures (related to working memory, as well as children's self-perception of their academic performance). Something is obviously different about the two studies, but I don't know enough about this kind of research to speculate in an informed way on what it is. (I would love to hear from someone better informed than I.)
It is notable, though, that the two research groups have very different attitudes towards the research. Based on their findings, the Swedish group have stopped treating patients in their study due to ethical concerns, as of 2010. The research group critiqued by the article in the OP were explicitly asked in 2007 by the Swedes to start psychological testing based on their data; the 2012 paper is the first such study they have released. Needless to say, there is no indication that they are modifying their treatment protocols or disclosures in light of these results.
In my opinion, the Swedes occupy a clear moral high ground -- it's unfathomable to me that a doctor could give a very potent drug with developmental effects to fetuses, not think to look for cognitive side effects, and then take 5 years to do so when asked. The gender and sexuality aspect of the situation is appalling, but not actually very surprising (given how intersex babies and trans children are treated in general). Both the post and the article it is based on focus more on the sexuality/gender angle, but there is an entirely separate issue of hasty, possibly unethical research protocols that has to be unpacked as well. (On preview, ostro also said this.)
posted by dendrochronologizer at 1:48 AM on August 6, 2012 [1 favorite]
It is notable, though, that the two research groups have very different attitudes towards the research. Based on their findings, the Swedish group have stopped treating patients in their study due to ethical concerns, as of 2010. The research group critiqued by the article in the OP were explicitly asked in 2007 by the Swedes to start psychological testing based on their data; the 2012 paper is the first such study they have released. Needless to say, there is no indication that they are modifying their treatment protocols or disclosures in light of these results.
In my opinion, the Swedes occupy a clear moral high ground -- it's unfathomable to me that a doctor could give a very potent drug with developmental effects to fetuses, not think to look for cognitive side effects, and then take 5 years to do so when asked. The gender and sexuality aspect of the situation is appalling, but not actually very surprising (given how intersex babies and trans children are treated in general). Both the post and the article it is based on focus more on the sexuality/gender angle, but there is an entirely separate issue of hasty, possibly unethical research protocols that has to be unpacked as well. (On preview, ostro also said this.)
posted by dendrochronologizer at 1:48 AM on August 6, 2012 [1 favorite]
Both the paper and the press release are extremely misleading.
CAH can be associated with really severe genital virilisation. The "lesbianism" "tomboyism" etc etc is all a big distraction. In fact if it isn't even that clear that CAH is associated with lesbianism or tomboyism, although it definitely is associated with low fertility. No doubt though researchers who are interested in CAH, are interested in both physical and psychological manifestations.
Treating mothers with female infants with CAH is pretty mainstream, not some wack-job experiment, although as with many relatively rare conditions in fetal medicine, there isn't the same evidence available as for say statins for cholesterol.
posted by roofus at 3:57 AM on August 6, 2012 [1 favorite]
CAH can be associated with really severe genital virilisation. The "lesbianism" "tomboyism" etc etc is all a big distraction. In fact if it isn't even that clear that CAH is associated with lesbianism or tomboyism, although it definitely is associated with low fertility. No doubt though researchers who are interested in CAH, are interested in both physical and psychological manifestations.
Treating mothers with female infants with CAH is pretty mainstream, not some wack-job experiment, although as with many relatively rare conditions in fetal medicine, there isn't the same evidence available as for say statins for cholesterol.
posted by roofus at 3:57 AM on August 6, 2012 [1 favorite]
Imagine for a moment having your kid "treated" in utero to control her behavior, and spending the rest of your life wondering who they would've been, rather than the person they became. Imagine, every time your child makes a mistake or fails, wondering if it was because you got that treatment.
Not supporting the study itself, but:
Imagine for a moment not having your kid "treated" in utero to control her behavior, even though that treatment exists, and spending the rest of your life wondering who they would've been rather than the person they became. Imagine, ever time your child makes a mistake or fails, wondering if you shouldn't have treated her.
Or, to take it back another level,
Imagine for a moment that your parents didn't give you a treatment that would have made your more amenable to treating your daughter in utero...
When our own and our children's mentalities start to reliably come under our conscious control, things are gonna get weird.
posted by ROU_Xenophobe at 8:01 AM on August 6, 2012 [3 favorites]
Not supporting the study itself, but:
Imagine for a moment not having your kid "treated" in utero to control her behavior, even though that treatment exists, and spending the rest of your life wondering who they would've been rather than the person they became. Imagine, ever time your child makes a mistake or fails, wondering if you shouldn't have treated her.
Or, to take it back another level,
Imagine for a moment that your parents didn't give you a treatment that would have made your more amenable to treating your daughter in utero...
When our own and our children's mentalities start to reliably come under our conscious control, things are gonna get weird.
posted by ROU_Xenophobe at 8:01 AM on August 6, 2012 [3 favorites]
.
I have no idea why that's my reaction, but it is.
posted by madcaptenor at 8:18 AM on August 6, 2012
I have no idea why that's my reaction, but it is.
posted by madcaptenor at 8:18 AM on August 6, 2012
I have a close (heterosexual, wears dresses) friend with adrenal hyperplasia. She is one of the people "at risk" for having a daughter with the same condition. She is taking the steroid mentioned in the article not because she's afraid of having a tomboy lesbian Rosemary's Baby but because she wants to prevent her potentially female child from having the same condition, a condition which can be a serious birth defect with severe consequences for the infant, including malfunction of the adrenal glands and a life-threatening inability to make her own cortisol. The hyperventilating journalism on this topic ("social engineering to breed out lesbians") doesn't seem interested in the actual medical issues at hand.
posted by foxy_hedgehog at 8:32 AM on August 6, 2012 [3 favorites]
posted by foxy_hedgehog at 8:32 AM on August 6, 2012 [3 favorites]
Initially I was ready to be outraged, at the "lesbianism/tomboyish" bits, but if it's to control a condition that causes genital abnormalities, it's kind of a tough bind. 20% chance of adverse circumstances versus the possibility of having a child with a birth defect is a really hard call. I think we need more study and experimentation, not less, in order to fix this issue -so that detection of actual CAH fetuses is earlier, and that there are less adverse side effects.
posted by corb at 8:43 AM on August 6, 2012
posted by corb at 8:43 AM on August 6, 2012
I'd have thought this was already well-known from past threads, but first and foremost people need to assimilate the biological fact that sex isn't a duality, it's a continuum. At the genetic level it's multi-factored and complexly interacting and this just becomes more and more true as you move through the developmental expression. Sexual dimorphism is real and it affects most anatomy at most levels, including the brain, but this developmental dimorphism is the result of all these complexly interacting processes and this produces a huge amount of variability. Not all differentiating processes at all levels are equally and fully expressed; this produces aggregated peak groupings in characteristics that we think of as male and female, but there's tails at either extreme and quite a bit of distribution through all the space between the two groupings. In other words, in some sense almost everyone is intersex and even in a more narrowly defined sense, a significant minority of humans are intersex.
It seems like an obvious and worthy goal to prevent "birth defects" but that is a prejudicial framing. I have a birth defect — a mutation in the collagen gene. That's a defect unambiguously. The vast majority of variance in sexual dimorphism is not a defect any more than is most other variance in human anatomy. Most is not dysfunctional whatsoever. Certainly tomboyism is not in any sense dysfunctional. When roofus defends this on the basis that "CAH can be associated with really severe genital virilisation", the inclusion of "really severe" is both reasonable and biased. Because "not really severe" genital virilisation includes things like "large clitorises", which is entirely within the normal range of human sexual anatomical diversity. Where do you decide that something is normal and another thing is a birth defect?
I'd argue that it's when it causes some health problems. Not merely that it is thought to be outside what conventional thought has declared to be normal sexual anatomy — conventional thought which is based upon a fallacy of biology.
The context for this discussion is that there's a long history of medical enforcement of a false ideal of sexual dimorphism, including at birth with surgical intervention and even without informing the parents. With the popular confusion about these issues, there's no reason to believe that parents will make good decisions about this. This is the sort of medical intervention that is unethical without unambiguous evidence that it addresses a severe medical condition and no such evidence exists at the stage of development at which this treatment is utilized. That it is used prophylactically, when there's such a wide range of possible outcomes and where most of those are entirely functional, would not require medical intervention, and are well within the common range of human variation, tells you more about our cultural biases and how they're expressed via medicine than anything else.
posted by Ivan Fyodorovich at 9:49 AM on August 6, 2012 [6 favorites]
It seems like an obvious and worthy goal to prevent "birth defects" but that is a prejudicial framing. I have a birth defect — a mutation in the collagen gene. That's a defect unambiguously. The vast majority of variance in sexual dimorphism is not a defect any more than is most other variance in human anatomy. Most is not dysfunctional whatsoever. Certainly tomboyism is not in any sense dysfunctional. When roofus defends this on the basis that "CAH can be associated with really severe genital virilisation", the inclusion of "really severe" is both reasonable and biased. Because "not really severe" genital virilisation includes things like "large clitorises", which is entirely within the normal range of human sexual anatomical diversity. Where do you decide that something is normal and another thing is a birth defect?
I'd argue that it's when it causes some health problems. Not merely that it is thought to be outside what conventional thought has declared to be normal sexual anatomy — conventional thought which is based upon a fallacy of biology.
The context for this discussion is that there's a long history of medical enforcement of a false ideal of sexual dimorphism, including at birth with surgical intervention and even without informing the parents. With the popular confusion about these issues, there's no reason to believe that parents will make good decisions about this. This is the sort of medical intervention that is unethical without unambiguous evidence that it addresses a severe medical condition and no such evidence exists at the stage of development at which this treatment is utilized. That it is used prophylactically, when there's such a wide range of possible outcomes and where most of those are entirely functional, would not require medical intervention, and are well within the common range of human variation, tells you more about our cultural biases and how they're expressed via medicine than anything else.
posted by Ivan Fyodorovich at 9:49 AM on August 6, 2012 [6 favorites]
Honestly, I have to say that I find all the concern for fetal independence kind of troubling.
The point that many of us have argued and fought for is that fetuses are not babies. They don't have any innate right to be born, they don't have any innate right not to be altered. They are scraps of flesh that might eventually end up being humans, but are not currently.
Parents shouldn't be bound to some idea that they can only terminate or medicate if there are "severe medical problems." Parents should also be able to terminate or medicate to ensure that they and their born-children have the best chance at happiness. If parents want to ensure that their children are born with normative sexual equipment - which does, in fact, have an impact on people's lives - so be it. I don't really see a problem with that.
If I were pregnant with a boy, and I was told that he was likely to be born with a small penis, but there were treatments that I could take that would ensure he had a larger one, I would probably take them, after investigating the side effects. Despite the fact that many people have small penises, and it's not technically a "birth defect" unless it's below a certain size, I would still take that medication. Because I know that having a small penis would probably negatively impact him in dating and trying to find someone later in life. (And yes, I know that many people with small penises have happy and fulfilling lives and great sexual relationships. I also know that most women I know /do/ judge, or at least mention it as a severe drawback, if the guy is below a certain length and girth.)
So yeah, there may be a spectrum of physical intersexuality - but what does that really matter? Why is such intervention unethical?
posted by corb at 10:03 AM on August 6, 2012 [1 favorite]
The point that many of us have argued and fought for is that fetuses are not babies. They don't have any innate right to be born, they don't have any innate right not to be altered. They are scraps of flesh that might eventually end up being humans, but are not currently.
Parents shouldn't be bound to some idea that they can only terminate or medicate if there are "severe medical problems." Parents should also be able to terminate or medicate to ensure that they and their born-children have the best chance at happiness. If parents want to ensure that their children are born with normative sexual equipment - which does, in fact, have an impact on people's lives - so be it. I don't really see a problem with that.
If I were pregnant with a boy, and I was told that he was likely to be born with a small penis, but there were treatments that I could take that would ensure he had a larger one, I would probably take them, after investigating the side effects. Despite the fact that many people have small penises, and it's not technically a "birth defect" unless it's below a certain size, I would still take that medication. Because I know that having a small penis would probably negatively impact him in dating and trying to find someone later in life. (And yes, I know that many people with small penises have happy and fulfilling lives and great sexual relationships. I also know that most women I know /do/ judge, or at least mention it as a severe drawback, if the guy is below a certain length and girth.)
So yeah, there may be a spectrum of physical intersexuality - but what does that really matter? Why is such intervention unethical?
posted by corb at 10:03 AM on August 6, 2012 [1 favorite]
"The point that many of us have argued and fought for is that fetuses are not babies. They don't have any innate right to be born, they don't have any innate right not to be altered. They are scraps of flesh that might eventually end up being humans, but are not currently. "
I agree with this entirely. But it's pretty weird that you would assume that the motivation for the reasoning of my argument and those related to it would be some supposed rights of the fetus. That's not the case and it reveals something about you more than it does me.
"If I were pregnant with a boy, and I was told that he was likely to be born with a small penis, but there were treatments that I could take that would ensure he had a larger one, I would probably take them, after investigating the side effects. Despite the fact that many people have small penises, and it's not technically a 'birth defect' unless it's below a certain size, I would still take that medication. Because I know that having a small penis would probably negatively impact him in dating and trying to find someone later in life. "
Really? Well, your child being female will cause far more social handicap than will a boy having a small penis, so you ought to apply the same reasoning to sex-select for only boys, too. And were it possible, you'd also ensure that their appearance conforms to the culture's ideals. If you're a member of a racial minority, you'd want to ensure that the child doesn't appear to be a member of that minority.
The argument is that such interventions don't exist in a sociopolitical vacuum. They are often motivated, as you've so vividly and unintentionally illustrated, by oppressive and unjust cultural biases and they often reify those biases. Real harm is being done.
posted by Ivan Fyodorovich at 10:29 AM on August 6, 2012
I agree with this entirely. But it's pretty weird that you would assume that the motivation for the reasoning of my argument and those related to it would be some supposed rights of the fetus. That's not the case and it reveals something about you more than it does me.
"If I were pregnant with a boy, and I was told that he was likely to be born with a small penis, but there were treatments that I could take that would ensure he had a larger one, I would probably take them, after investigating the side effects. Despite the fact that many people have small penises, and it's not technically a 'birth defect' unless it's below a certain size, I would still take that medication. Because I know that having a small penis would probably negatively impact him in dating and trying to find someone later in life. "
Really? Well, your child being female will cause far more social handicap than will a boy having a small penis, so you ought to apply the same reasoning to sex-select for only boys, too. And were it possible, you'd also ensure that their appearance conforms to the culture's ideals. If you're a member of a racial minority, you'd want to ensure that the child doesn't appear to be a member of that minority.
The argument is that such interventions don't exist in a sociopolitical vacuum. They are often motivated, as you've so vividly and unintentionally illustrated, by oppressive and unjust cultural biases and they often reify those biases. Real harm is being done.
posted by Ivan Fyodorovich at 10:29 AM on August 6, 2012
The argument is that such interventions don't exist in a sociopolitical vacuum. They are often motivated, as you've so vividly and unintentionally illustrated, by oppressive and unjust cultural biases and they often reify those biases. Real harm is being done.
Can you explain to me how you think real harm is being done? Even if these decisions were being made against a backdrop of biases, how do you think it is actively harmful to ensure that your child will not have this enormous cross to bear? And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness? It feels like that expectation would force people to make personally detrimental, but politically "sound" choices.
posted by corb at 10:33 AM on August 6, 2012
Can you explain to me how you think real harm is being done? Even if these decisions were being made against a backdrop of biases, how do you think it is actively harmful to ensure that your child will not have this enormous cross to bear? And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness? It feels like that expectation would force people to make personally detrimental, but politically "sound" choices.
posted by corb at 10:33 AM on August 6, 2012
Everything Ivan says is so. But variability in nature is essentially infinite, and human thought can't deal with infinite variability. We're massively committed to thinking in categories; and we base our categories on clearly distinguishable examples (e.g. boy, girl) and then suppress consideration of all the intermediate cases in the (quite real) continuum of variability that connects them.
If the moral of the story is that categorization is wrong, that categorization is all by itself the same as bigotry and so we must give up categories, that's saying we must give up thinking. We'll just have to learn to live in the timeless, thing-less undifferentiated Om like cats.
But the moral we're to draw may only be that these categories (whatever we're discussing at a given moment) are bad and wrong and we must develop and substitute finer-grained ones here. That's more achieveable, maybe. But there's a limit to our total processing power, and it's actually pretty low. You may be certain that when you devote effort and close attention to fine-grained and polished consideration here you are simultaneously getting rustier and cruder somewhere else.
posted by jfuller at 10:40 AM on August 6, 2012
If the moral of the story is that categorization is wrong, that categorization is all by itself the same as bigotry and so we must give up categories, that's saying we must give up thinking. We'll just have to learn to live in the timeless, thing-less undifferentiated Om like cats.
But the moral we're to draw may only be that these categories (whatever we're discussing at a given moment) are bad and wrong and we must develop and substitute finer-grained ones here. That's more achieveable, maybe. But there's a limit to our total processing power, and it's actually pretty low. You may be certain that when you devote effort and close attention to fine-grained and polished consideration here you are simultaneously getting rustier and cruder somewhere else.
posted by jfuller at 10:40 AM on August 6, 2012
That's an interesting argument, jfuller, and I think I agree with it...just not in this specific context. (It's a variation of one I often make — we must, as a practical matter, make distinctions which are quite arbitrary. So we should just do the best we can at deciding where to make those distinctions, not decide that making distinctions is itself a bad thing.)
In this case, though, I'm not arguing that we should make finer distinctions but rather that the distinction should be qualitatively changed — that rather than using the "male/female" opposition, it's "functional/dysfunctional" opposition. The latter won't remove all ambiguity, but it places the issue in a far less problematic context. Because what I think is happening, as evidenced by corb's use of the telling word "strangeness", is that there's either a conflation of the two (some weird mix of conventional notions of sex and functionality) or that it's driven by conventional notions about sex and is given a veneer of reasonableness on the basis of functionality.
"You may be certain that when you devote effort and close attention to fine-grained and polished consideration here you are simultaneously getting rustier and cruder somewhere else."
A weakness of your argument is that you seem to assume that all possible distinction are equally useful. It may well be the case that if we devote our limited cognitive processing to making fine-grained and polished considerations here and not there, we're using that capacity more productively here and not there.
posted by Ivan Fyodorovich at 11:05 AM on August 6, 2012
In this case, though, I'm not arguing that we should make finer distinctions but rather that the distinction should be qualitatively changed — that rather than using the "male/female" opposition, it's "functional/dysfunctional" opposition. The latter won't remove all ambiguity, but it places the issue in a far less problematic context. Because what I think is happening, as evidenced by corb's use of the telling word "strangeness", is that there's either a conflation of the two (some weird mix of conventional notions of sex and functionality) or that it's driven by conventional notions about sex and is given a veneer of reasonableness on the basis of functionality.
"You may be certain that when you devote effort and close attention to fine-grained and polished consideration here you are simultaneously getting rustier and cruder somewhere else."
A weakness of your argument is that you seem to assume that all possible distinction are equally useful. It may well be the case that if we devote our limited cognitive processing to making fine-grained and polished considerations here and not there, we're using that capacity more productively here and not there.
posted by Ivan Fyodorovich at 11:05 AM on August 6, 2012
The context for this discussion is that there's a long history of medical enforcement of a false ideal of sexual dimorphism, including at birth with surgical intervention and even without informing the parents. With the popular confusion about these issues, there's no reason to believe that parents will make good decisions about this. This is the sort of medical intervention that is unethical without unambiguous evidence that it addresses a severe medical condition and no such evidence exists at the stage of development at which this treatment is utilized. That it is used prophylactically, when there's such a wide range of possible outcomes and where most of those are entirely functional, would not require medical intervention, and are well within the common range of human variation, tells you more about our cultural biases and how they're expressed via medicine than anything else.
I came in here to say something about social context, but Ivan has said it as well as or better than I ever could.
And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness?
Being intersex or having reproductive anatomy toward one of the outer edges of the bell curve is NOT a handicap, any more than having one green eye and one blue eye. It's unusual, may make people look twice, and filters out people who are freaked out by your body's difference(s) as candidates for close relationships, but it is not a handicap.
Anyhow, I think the main thrust of the paper is less the fact that mothers were being offered a procedure to try to prevent "virilization" than the fact that oversight, followup, informed consent and all that good clinical stuff has been horribly overlooked, possibly out of some idea that this is all so obviously good for the child, why slow it down with basic researching ethics?
I think this is the main thrust as well. If quality studies had been done, published, and peer-reviewed regarding long-term outcomes, and if both doctor and patient were made fully aware of the potential risks and benefits of such treatment, I don't think this would be such an issue, nor do I think the study's authors would have bothered with the study. It's the fact that we don't have enough information regarding whether it is either safe or effective and that pregnant women aren't being told that a study has shown up to 20% serious adverse long-term outcomes prior to electing treatment that makes this problematic.
posted by notashroom at 11:27 AM on August 6, 2012 [3 favorites]
I came in here to say something about social context, but Ivan has said it as well as or better than I ever could.
And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness?
Being intersex or having reproductive anatomy toward one of the outer edges of the bell curve is NOT a handicap, any more than having one green eye and one blue eye. It's unusual, may make people look twice, and filters out people who are freaked out by your body's difference(s) as candidates for close relationships, but it is not a handicap.
Anyhow, I think the main thrust of the paper is less the fact that mothers were being offered a procedure to try to prevent "virilization" than the fact that oversight, followup, informed consent and all that good clinical stuff has been horribly overlooked, possibly out of some idea that this is all so obviously good for the child, why slow it down with basic researching ethics?
I think this is the main thrust as well. If quality studies had been done, published, and peer-reviewed regarding long-term outcomes, and if both doctor and patient were made fully aware of the potential risks and benefits of such treatment, I don't think this would be such an issue, nor do I think the study's authors would have bothered with the study. It's the fact that we don't have enough information regarding whether it is either safe or effective and that pregnant women aren't being told that a study has shown up to 20% serious adverse long-term outcomes prior to electing treatment that makes this problematic.
posted by notashroom at 11:27 AM on August 6, 2012 [3 favorites]
Being intersex or having reproductive anatomy toward one of the outer edges of the bell curve is NOT a handicap
Legally, it is. A disability is "a physical or mental impairment that substantially limits one or more of the major life activities ... or being regarded as having such an impairment." Reproduction is definitely considered a major life activity, and I suspect sex counts as well, at least to some extent. So even if being intersex or having non-average reproductive anatomy does not, in fact, interfere with reproduction or sex, it would be sufficient that people regard it as such.
To argue that this doesn't involve a disability is to argue that people with this condition do not deserve legal protection from social stigma. Now, maybe that stigma shouldn't exist in the first place, but that's a different question from whether we should protect people from it in the meantime.
As for treatment or abortion: preventing women from modifying or aborting fetuses in response to potential genetic or developmental characteristics amounts to sacrificing women's rights in order to treat the symptom rather than the underlying disease. As I said in a thread about sex-selective abortion: "the solution to [the problem of sex-selective abortion] is promoting women's rights and equality, not restricting a woman's right to know about her body (i.e. the fetus) and her access to medical procedures (i.e. abortion). Preventing sex-selective abortion is treating the symptom, not the disease. It does nothing to counter the underlying problems of the unequal treatment and valuation of women and girls."
The same thinking applies here. A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies.
posted by jedicus at 7:06 PM on August 6, 2012 [1 favorite]
Legally, it is. A disability is "a physical or mental impairment that substantially limits one or more of the major life activities ... or being regarded as having such an impairment." Reproduction is definitely considered a major life activity, and I suspect sex counts as well, at least to some extent. So even if being intersex or having non-average reproductive anatomy does not, in fact, interfere with reproduction or sex, it would be sufficient that people regard it as such.
To argue that this doesn't involve a disability is to argue that people with this condition do not deserve legal protection from social stigma. Now, maybe that stigma shouldn't exist in the first place, but that's a different question from whether we should protect people from it in the meantime.
As for treatment or abortion: preventing women from modifying or aborting fetuses in response to potential genetic or developmental characteristics amounts to sacrificing women's rights in order to treat the symptom rather than the underlying disease. As I said in a thread about sex-selective abortion: "the solution to [the problem of sex-selective abortion] is promoting women's rights and equality, not restricting a woman's right to know about her body (i.e. the fetus) and her access to medical procedures (i.e. abortion). Preventing sex-selective abortion is treating the symptom, not the disease. It does nothing to counter the underlying problems of the unequal treatment and valuation of women and girls."
The same thinking applies here. A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies.
posted by jedicus at 7:06 PM on August 6, 2012 [1 favorite]
Being intersex or having reproductive anatomy toward one of the outer edges of the bell curve is NOT a handicap, any more than having one green eye and one blue eye. It's unusual, may make people look twice, and filters out people who are freaked out by your body's difference(s) as candidates for close relationships, but it is not a handicap.
Let's apply the same reasoning to any other physical abnormality.
posted by rr at 7:10 PM on August 6, 2012
Let's apply the same reasoning to any other physical abnormality.
posted by rr at 7:10 PM on August 6, 2012
A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies.
I'm out of favorites (some threads are just too great!) but this, this, a thousand times this. This shit is what makes those godawful doctors able to lie about the fetus, just because omfg, the woman might abort based on that information!
posted by corb at 7:15 PM on August 6, 2012
I'm out of favorites (some threads are just too great!) but this, this, a thousand times this. This shit is what makes those godawful doctors able to lie about the fetus, just because omfg, the woman might abort based on that information!
posted by corb at 7:15 PM on August 6, 2012
?The intersex community is hardly the only group to see such a decrease in live births--selective abortion of pregnancies involving Down syndrome, spina bifida, and many other "conditions" have significantly reduced the number of children born with many physical status that are today deemed "defects." Whatever one's position on abortion, I'd hope people would understand how those of us who live in bodies deemed imperfect feel insulted and harmed by the medical counseling that it is reasonable to believe that would be better that people like us were never born, justifying a late-term abortion.
This is some weird 'noble suffering' reasoning. How large does the number of people with a given condition have to be before it becomes a community that must be preserved despite medicine's ability to eliminate the condition? I mean, you don't see people making this kind of argument about really rare diseases.
What if the condition could be eliminated after birth through medication? Would you say that no one should be given a cure for Down syndrome, if one existed? Should we not treat leprosy in order to preserve the communities in leper colonies? Should we not have invented the polio vaccine so that people paralyzed by polio wouldn't feel insulted or harmed?
posted by jedicus at 7:20 PM on August 6, 2012
This is some weird 'noble suffering' reasoning. How large does the number of people with a given condition have to be before it becomes a community that must be preserved despite medicine's ability to eliminate the condition? I mean, you don't see people making this kind of argument about really rare diseases.
What if the condition could be eliminated after birth through medication? Would you say that no one should be given a cure for Down syndrome, if one existed? Should we not treat leprosy in order to preserve the communities in leper colonies? Should we not have invented the polio vaccine so that people paralyzed by polio wouldn't feel insulted or harmed?
posted by jedicus at 7:20 PM on August 6, 2012
They compared it to "Down syndrome, spina bifida, and many other 'conditions.'" Apart from being contagious I'm not sure leprosy and polio are materially worse.
I'm fully willing to be convince that being intersexed and the underlying conditions that cause it have no detrimental effects on health, and that the issue is entirely one of social bias. But that is demonstrably not the case with Down syndrome and spina bifida.
I chose my examples because they are treatable, visible conditions that have mostly been eliminated and no one is particularly upset that they are gone. I want to know why Down syndrome and spina bifida should be treated differently. And if being intersex or the underlying conditions that cause it do actually have detrimental effects on health, then I'd like to know why it shouldn't be treated the same way.
posted by jedicus at 7:39 PM on August 6, 2012
I'm fully willing to be convince that being intersexed and the underlying conditions that cause it have no detrimental effects on health, and that the issue is entirely one of social bias. But that is demonstrably not the case with Down syndrome and spina bifida.
I chose my examples because they are treatable, visible conditions that have mostly been eliminated and no one is particularly upset that they are gone. I want to know why Down syndrome and spina bifida should be treated differently. And if being intersex or the underlying conditions that cause it do actually have detrimental effects on health, then I'd like to know why it shouldn't be treated the same way.
posted by jedicus at 7:39 PM on August 6, 2012
"Let's apply the same reasoning to any other physical abnormality."
Why?
posted by klangklangston at 8:27 PM on August 6, 2012
Why?
posted by klangklangston at 8:27 PM on August 6, 2012
"Reproduction is definitely considered a major life activity, and I suspect sex counts as well, at least to some extent. So even if being intersex or having non-average reproductive anatomy does not, in fact, interfere with reproduction or sex, it would be sufficient that people regard it as such."
That's a bunch of hand-waving speculative nonsense right there. There is no universal legal definition of disability, just various standards for different purposes. Your "even if" implies that usually being intersexed "interfere[s] with reproduction or sex"; and throwing "intereres with sex" into the same basket as "interferes with reproduction" creates such ambiguity that it casts an absurdly wide net. But you don't stop there, you argue that it's sufficient that people merely assume, falsely, that it "intereferes with reproduction or sex" and imply that most people do, in fact, assume so.
What a spectacle of either muddled or dishonest reasoning.
"A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies."
When you equate selective abortion with therapies, you are begging the question. Altering the development of the fetus in this context is altering the child that will be, not altering the experience of the pregnancy itself, how it affects the woman's body or her health.
Sex-selective abortion is not the same, as it ends the pregnancy. Yes, the pregnancies which are not ended and result in the desired sex have exactly the same characteristics as above, but in those cases no action was taken. The only thing which could be regulated would be abortions that are indistinguishable from conventional abortions and which, in any event, unambiguously involve a woman's control of her own body in that she ends the pregnancy.
Sex-selective abortion is bad in the context of cultural gender bias it and causes harm in the sense that I mentioned previously, but legally preventing it would be legally preventing a woman from choosing to end a pregnancy, and that's a greater harm.
The same argument applies to all abortion for any reason. Abortion rights is not the correct framework within which to look at this.
A better model would be sex-selection before pregnancy (which is already possible) and, more so, hypothetical genetic alteration before pregnancy. There are no rights here. People arguably have a right to reproduce, but they certainly don't have any rights to choose what kind of children they have. They mostly have no ability to do so, but that will change as technology improves. And though some choices will be unambiguously good for everyone — such as eliminating painful and costly genetic defects such as I suffer — many or most will be bad for society as a whole, if not for the child. (And arguably the child, as well).
This is most especially the case with regard to everything which is well within the norm of human variation but which happens to be culturally stigmatized. This includes a large portion of what we are calling "intersex" and this is exactly comparable to non-heterosexuality. All the reasoning that's been used above to justify this intervention, but most specifically yours, applies to homosexuality in our culture prior to 2000 and arguably still today. Does homosexuality interfere with reproduction or sex? Why, yes, it does if we're using the same reasoning as you used with regard to intersex and disability. Homosexuality is a disability according to you — most especially in that you argued that it not even need be the case that it actually "interferes with reproduction or sex", but merely that people believe that it does. That example shows how monstrously misleading your argument really is. I will be generous and assume that this never occurred to you — but that should indicate to you that you need to spend a lot more time considering these issues.
This is the response to corb's questions and implicit arguments above, as well. She wrote:
"Even if these decisions were being made against a backdrop of biases, how do you think it is actively harmful to ensure that your child will not have this enormous cross to bear? And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness? It feels like that expectation would force people to make personally detrimental, but politically 'sound' choices."
In our society, it clearly, unambiguously would be ensuring that one's child not have an "enormous cross to bear", avoiding a "handicap", in the context of a "backdrop of biases", to prevent a developing fetus via therapy, or prevent a fetus via pre-implantation genetic alteration, from being gay or being black. "What possible harm could be done?" Really? Is the expectation that people not do this some unfair thing that "forces people to make personally detrimental but politically 'sound' choices"? I have enormous difficulty understanding how anyone would frame the question that way, as if the "politically 'sound' choice" were some trifling example of PCism.
I'm not arguing that there aren't unambiguous disabilities. I am arguing that the less the condition involves active physical pain and suffering (not emotional pain and suffering, because that can be determined by cultural context and is at least as likely to be extrensic as intrinsic) and the more that it involves social stigma, the more cautious we should be in labeling it a "disability" and be especially reluctant to medically intervene.
A big reason for this is that history has shown clearly that the risk is not in being passive in the face of correctable medical conditions which cause misery, but rather in being too aggressive in pursuing medical therapies to correct diagnosed conditions which are really, at root, just the application of social stigma. There is a long, long history of medicine being misused this way. I understand that most people aren't aware of this. I know that most people here are aware of the medicalizing of homosexuality and the many past treatments that were pursued to "cure" this "illness". But that's only one prominent example. There are many others — forced hysterectomies of promiscuous women (an attempt to cure their unnatural libido) is one.
It's hard for people to really get their heads around this because medicine has changed so quickly within living memory. It's changed both with regard to science, but also with regard to how it defines pathology. In the past it was far, far more yoked to conventional social norms than it is today. That it is less so today creates a kind of false confidence that it is not longer like this at all. But that's not true — it's still often like this. There still are doctors out there who pathologize being a tomboy and see it as perfectly appropriate to seek a therapy which will cure or prevent tomboyism. And they do so using exactly the same reasoning as jedicus and corb do above — that it's merely sufficient that most people agree with the stigma against something like tomboyism. That makes it a de facto disability, and why shouldn't medicine correct this, it it's able? That's the default reasoning for many medical professionals still today and they are the inheritors of the tradition that pathologized homosexuality and conceived of treatments to correct it. It should be clear to us that this habit of thought is a mistake and where there is not physical pain and suffering we should be very reluctant to pathologize.
posted by Ivan Fyodorovich at 4:19 AM on August 7, 2012 [1 favorite]
That's a bunch of hand-waving speculative nonsense right there. There is no universal legal definition of disability, just various standards for different purposes. Your "even if" implies that usually being intersexed "interfere[s] with reproduction or sex"; and throwing "intereres with sex" into the same basket as "interferes with reproduction" creates such ambiguity that it casts an absurdly wide net. But you don't stop there, you argue that it's sufficient that people merely assume, falsely, that it "intereferes with reproduction or sex" and imply that most people do, in fact, assume so.
What a spectacle of either muddled or dishonest reasoning.
"A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies."
When you equate selective abortion with therapies, you are begging the question. Altering the development of the fetus in this context is altering the child that will be, not altering the experience of the pregnancy itself, how it affects the woman's body or her health.
Sex-selective abortion is not the same, as it ends the pregnancy. Yes, the pregnancies which are not ended and result in the desired sex have exactly the same characteristics as above, but in those cases no action was taken. The only thing which could be regulated would be abortions that are indistinguishable from conventional abortions and which, in any event, unambiguously involve a woman's control of her own body in that she ends the pregnancy.
Sex-selective abortion is bad in the context of cultural gender bias it and causes harm in the sense that I mentioned previously, but legally preventing it would be legally preventing a woman from choosing to end a pregnancy, and that's a greater harm.
The same argument applies to all abortion for any reason. Abortion rights is not the correct framework within which to look at this.
A better model would be sex-selection before pregnancy (which is already possible) and, more so, hypothetical genetic alteration before pregnancy. There are no rights here. People arguably have a right to reproduce, but they certainly don't have any rights to choose what kind of children they have. They mostly have no ability to do so, but that will change as technology improves. And though some choices will be unambiguously good for everyone — such as eliminating painful and costly genetic defects such as I suffer — many or most will be bad for society as a whole, if not for the child. (And arguably the child, as well).
This is most especially the case with regard to everything which is well within the norm of human variation but which happens to be culturally stigmatized. This includes a large portion of what we are calling "intersex" and this is exactly comparable to non-heterosexuality. All the reasoning that's been used above to justify this intervention, but most specifically yours, applies to homosexuality in our culture prior to 2000 and arguably still today. Does homosexuality interfere with reproduction or sex? Why, yes, it does if we're using the same reasoning as you used with regard to intersex and disability. Homosexuality is a disability according to you — most especially in that you argued that it not even need be the case that it actually "interferes with reproduction or sex", but merely that people believe that it does. That example shows how monstrously misleading your argument really is. I will be generous and assume that this never occurred to you — but that should indicate to you that you need to spend a lot more time considering these issues.
This is the response to corb's questions and implicit arguments above, as well. She wrote:
"Even if these decisions were being made against a backdrop of biases, how do you think it is actively harmful to ensure that your child will not have this enormous cross to bear? And more to the point, why should you allow your own child to be handicapped in order to possibly make society more tolerant of strangeness? It feels like that expectation would force people to make personally detrimental, but politically 'sound' choices."
In our society, it clearly, unambiguously would be ensuring that one's child not have an "enormous cross to bear", avoiding a "handicap", in the context of a "backdrop of biases", to prevent a developing fetus via therapy, or prevent a fetus via pre-implantation genetic alteration, from being gay or being black. "What possible harm could be done?" Really? Is the expectation that people not do this some unfair thing that "forces people to make personally detrimental but politically 'sound' choices"? I have enormous difficulty understanding how anyone would frame the question that way, as if the "politically 'sound' choice" were some trifling example of PCism.
I'm not arguing that there aren't unambiguous disabilities. I am arguing that the less the condition involves active physical pain and suffering (not emotional pain and suffering, because that can be determined by cultural context and is at least as likely to be extrensic as intrinsic) and the more that it involves social stigma, the more cautious we should be in labeling it a "disability" and be especially reluctant to medically intervene.
A big reason for this is that history has shown clearly that the risk is not in being passive in the face of correctable medical conditions which cause misery, but rather in being too aggressive in pursuing medical therapies to correct diagnosed conditions which are really, at root, just the application of social stigma. There is a long, long history of medicine being misused this way. I understand that most people aren't aware of this. I know that most people here are aware of the medicalizing of homosexuality and the many past treatments that were pursued to "cure" this "illness". But that's only one prominent example. There are many others — forced hysterectomies of promiscuous women (an attempt to cure their unnatural libido) is one.
It's hard for people to really get their heads around this because medicine has changed so quickly within living memory. It's changed both with regard to science, but also with regard to how it defines pathology. In the past it was far, far more yoked to conventional social norms than it is today. That it is less so today creates a kind of false confidence that it is not longer like this at all. But that's not true — it's still often like this. There still are doctors out there who pathologize being a tomboy and see it as perfectly appropriate to seek a therapy which will cure or prevent tomboyism. And they do so using exactly the same reasoning as jedicus and corb do above — that it's merely sufficient that most people agree with the stigma against something like tomboyism. That makes it a de facto disability, and why shouldn't medicine correct this, it it's able? That's the default reasoning for many medical professionals still today and they are the inheritors of the tradition that pathologized homosexuality and conceived of treatments to correct it. It should be clear to us that this habit of thought is a mistake and where there is not physical pain and suffering we should be very reluctant to pathologize.
posted by Ivan Fyodorovich at 4:19 AM on August 7, 2012 [1 favorite]
After they married, my parents had a couple of years of discussion over whether or not to have a child, because they weren't sure - in the political and cultural context of the United States in the early 1960s - that having a mixed-race child would be doing it any favors, and might be doing it harm.
posted by rtha at 6:24 AM on August 7, 2012
posted by rtha at 6:24 AM on August 7, 2012
There is no universal legal definition of disability, just various standards for different purposes.
The ADA definition is by far the most significant one, and that's the one I used.
But you don't stop there, you argue that it's sufficient that people merely assume, falsely, that it "intereferes with reproduction or sex"
By the ADA definition it is sufficient. That's a significant part of the ADA's protection, that it applies to people who are regarded as disabled even if they aren't actually disabled.
and imply that most people do, in fact, assume so.
Do they not? I'd be glad to hear we had come so far in educating the public as to the nature of intersex, but I'll bet that most people would assume that it interferes with reproduction, sex, or both. Feel free to dispute this claim with actual facts.
Altering the development of the fetus in this context is altering the child that will be, not altering the experience of the pregnancy itself, how it affects the woman's body or her health.
No, altering the development of the fetus is altering a fetus, full stop. It does not matter one whit that a child with certain characteristics may result. Indeed, a woman should have the absolute right to alter the fetus and then, if she so chooses, to terminate the pregnancy for any reason or no reason at any time before birth. If this leads to social problems, then it should be countered at the social level with education, not by forbidding women from doing certain things with their body, whether it be abortion or alteration of a fetus in utero.
People arguably have a right to reproduce, but they certainly don't have any rights to choose what kind of children they have. They mostly have no ability to do so
Ah, so people don't have the right to choose a mate in part based on race or lack (or presence) of heritable genetic characteristics? We could require all women to receive only randomized sperm donations, since they have no right to choose what kind of children to have? That's an interesting claim.
posted by jedicus at 7:17 AM on August 7, 2012 [2 favorites]
The ADA definition is by far the most significant one, and that's the one I used.
But you don't stop there, you argue that it's sufficient that people merely assume, falsely, that it "intereferes with reproduction or sex"
By the ADA definition it is sufficient. That's a significant part of the ADA's protection, that it applies to people who are regarded as disabled even if they aren't actually disabled.
and imply that most people do, in fact, assume so.
Do they not? I'd be glad to hear we had come so far in educating the public as to the nature of intersex, but I'll bet that most people would assume that it interferes with reproduction, sex, or both. Feel free to dispute this claim with actual facts.
Altering the development of the fetus in this context is altering the child that will be, not altering the experience of the pregnancy itself, how it affects the woman's body or her health.
No, altering the development of the fetus is altering a fetus, full stop. It does not matter one whit that a child with certain characteristics may result. Indeed, a woman should have the absolute right to alter the fetus and then, if she so chooses, to terminate the pregnancy for any reason or no reason at any time before birth. If this leads to social problems, then it should be countered at the social level with education, not by forbidding women from doing certain things with their body, whether it be abortion or alteration of a fetus in utero.
People arguably have a right to reproduce, but they certainly don't have any rights to choose what kind of children they have. They mostly have no ability to do so
Ah, so people don't have the right to choose a mate in part based on race or lack (or presence) of heritable genetic characteristics? We could require all women to receive only randomized sperm donations, since they have no right to choose what kind of children to have? That's an interesting claim.
posted by jedicus at 7:17 AM on August 7, 2012 [2 favorites]
Does homosexuality interfere with reproduction or sex? Why, yes, it does
No, it doesn't. All else being equal, homosexual men and women can reproduce and engage in a full range of sexual activities. Nor are they typically regarded as being unable to do so, even by people with anti-homosexual beliefs. In fact, they would claim that homosexuals are really just heterosexuals engaged in a 'lifestyle choice.'
This is not the case for some intersex people. A lot of conditions are lumped in under the intersex label, some of which do not interfere with reproduction or sex, but some of which definitely can result in infertility or sterility or interfere with sex.
posted by jedicus at 7:32 AM on August 7, 2012
No, it doesn't. All else being equal, homosexual men and women can reproduce and engage in a full range of sexual activities. Nor are they typically regarded as being unable to do so, even by people with anti-homosexual beliefs. In fact, they would claim that homosexuals are really just heterosexuals engaged in a 'lifestyle choice.'
This is not the case for some intersex people. A lot of conditions are lumped in under the intersex label, some of which do not interfere with reproduction or sex, but some of which definitely can result in infertility or sterility or interfere with sex.
posted by jedicus at 7:32 AM on August 7, 2012
Legally, it is. A disability is "a physical or mental impairment that substantially limits one or more of the major life activities ... or being regarded as having such an impairment." Reproduction is definitely considered a major life activity, and I suspect sex counts as well, at least to some extent. So even if being intersex or having non-average reproductive anatomy does not, in fact, interfere with reproduction or sex, it would be sufficient that people regard it as such.
There are many, many conditions that can substantially limit or impair reproduction, reproductive opportunities, and sex. Among these are alcoholism, addiction to other drugs such as cocaine or heroin, halitosis, poor dental health, microphallus, tilted uterus, male and female circumcision, and low sperm count. Are you arguing that all of those should be categorized as disabilities under the ADA?
We have to draw the line somewhere, and I'd argue that social stigma alone is insufficient to categorize a condition as a handicap. If social stigma were enough, then being a short male, an ugly woman, a member of the lowest income quintile, or a member of any minority group ought to qualify. In a different cultural understanding of gender, we wouldn't have the need to police sex and gender so much to enforce an arbitrary binary concept.
To argue that this doesn't involve a disability is to argue that people with this condition do not deserve legal protection from social stigma. Now, maybe that stigma shouldn't exist in the first place, but that's a different question from whether we should protect people from it in the meantime.
I will argue that sexualities other than heterosexuality deserve legal protection from harms due to social stigma, and that those sexualities do not involve disability. I think that is consistent with arguing that otherwise healthy people with intersex or unusually-configured reproductive parts are not disabled. And the question of whether those stigmas ought to exist or whether there should be legal protections are entirely separate from whether those configurations constitute a handicap. There are legal protections in place to prevent discrimination against women in many capacities; do you consider women to be inherently handicapped?
A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies.
A woman's control over her body is paramount; I agree. However, harm is done simply by withholding information which would allow her to make an informed decision regarding abortion or available therapies. Were she told that there is very little quality data available on whether this treatment is effective and that there may be a 20% chance that her offspring will suffer long-term consequences as a result of taking it, she might well make a different choice. The harm in this case should be addressed at both a social and a scientific research level.
That is to say, if the treatment is found to be safe and effective with quality peer-reviewed research and women choose to undergo it with that information in hand, I wouldn't be not delighted by that choice, but I certainly wouldn't stand in their way; but I do not think promoting therapies with potential severe consequences without both having quality data and sharing it with the potential patient is either ethical or wise.
posted by notashroom at 8:20 AM on August 7, 2012
There are many, many conditions that can substantially limit or impair reproduction, reproductive opportunities, and sex. Among these are alcoholism, addiction to other drugs such as cocaine or heroin, halitosis, poor dental health, microphallus, tilted uterus, male and female circumcision, and low sperm count. Are you arguing that all of those should be categorized as disabilities under the ADA?
We have to draw the line somewhere, and I'd argue that social stigma alone is insufficient to categorize a condition as a handicap. If social stigma were enough, then being a short male, an ugly woman, a member of the lowest income quintile, or a member of any minority group ought to qualify. In a different cultural understanding of gender, we wouldn't have the need to police sex and gender so much to enforce an arbitrary binary concept.
To argue that this doesn't involve a disability is to argue that people with this condition do not deserve legal protection from social stigma. Now, maybe that stigma shouldn't exist in the first place, but that's a different question from whether we should protect people from it in the meantime.
I will argue that sexualities other than heterosexuality deserve legal protection from harms due to social stigma, and that those sexualities do not involve disability. I think that is consistent with arguing that otherwise healthy people with intersex or unusually-configured reproductive parts are not disabled. And the question of whether those stigmas ought to exist or whether there should be legal protections are entirely separate from whether those configurations constitute a handicap. There are legal protections in place to prevent discrimination against women in many capacities; do you consider women to be inherently handicapped?
A woman's control over her body is paramount. Any harm resulting from selective abortion or therapies should be countered at the social level, not at the level of controlling individual women's control over their bodies.
A woman's control over her body is paramount; I agree. However, harm is done simply by withholding information which would allow her to make an informed decision regarding abortion or available therapies. Were she told that there is very little quality data available on whether this treatment is effective and that there may be a 20% chance that her offspring will suffer long-term consequences as a result of taking it, she might well make a different choice. The harm in this case should be addressed at both a social and a scientific research level.
That is to say, if the treatment is found to be safe and effective with quality peer-reviewed research and women choose to undergo it with that information in hand, I wouldn't be not delighted by that choice, but I certainly wouldn't stand in their way; but I do not think promoting therapies with potential severe consequences without both having quality data and sharing it with the potential patient is either ethical or wise.
posted by notashroom at 8:20 AM on August 7, 2012
> No, altering the development of the fetus is altering a fetus, full stop. It does not matter one whit that a child with certain characteristics may result.
"Certain characteristics." Thalidomide flippers OK?
posted by jfuller at 8:56 AM on August 7, 2012
"Certain characteristics." Thalidomide flippers OK?
posted by jfuller at 8:56 AM on August 7, 2012
Are you arguing that all of those should be categorized as disabilities under the ADA?
Sure (except for the use of illegal drugs; that's specifically excluded from the ADA). Some of them may seem trivial, but that should only affect the level of reasonable accommodation, not whether they should be considered disabilities in the first place.
otherwise healthy people with intersex or unusually-configured reproductive parts are not disabled
Well it depends on what you mean by "otherwise healthy," doesn't it? And I think that's a big part of the disagreement between me and Ivan. I'm primarily talking about those intersex people for whom the underlying condition produces actual or perceived difficulties with reproduction or sex (e.g. infertility). I think Ivan is taking a more expansive view (e.g. talking about normal human variation). There's a big difference between merely having a smallish penis or a largeish clitoris versus having a condition that also renders the person infertile.
but I do not think promoting therapies with potential severe consequences without both having quality data and sharing it with the potential patient is either ethical or wise.
I certainly agree with that, both in general and in this particular case. Perhaps the issue can be revisited once non-invasive, early genetic testing of the fetus becomes available (i.e. using the small amount of fetal DNA found in the mother's blood), which should make much more targeted treatment possible.
posted by jedicus at 8:56 AM on August 7, 2012
Sure (except for the use of illegal drugs; that's specifically excluded from the ADA). Some of them may seem trivial, but that should only affect the level of reasonable accommodation, not whether they should be considered disabilities in the first place.
otherwise healthy people with intersex or unusually-configured reproductive parts are not disabled
Well it depends on what you mean by "otherwise healthy," doesn't it? And I think that's a big part of the disagreement between me and Ivan. I'm primarily talking about those intersex people for whom the underlying condition produces actual or perceived difficulties with reproduction or sex (e.g. infertility). I think Ivan is taking a more expansive view (e.g. talking about normal human variation). There's a big difference between merely having a smallish penis or a largeish clitoris versus having a condition that also renders the person infertile.
but I do not think promoting therapies with potential severe consequences without both having quality data and sharing it with the potential patient is either ethical or wise.
I certainly agree with that, both in general and in this particular case. Perhaps the issue can be revisited once non-invasive, early genetic testing of the fetus becomes available (i.e. using the small amount of fetal DNA found in the mother's blood), which should make much more targeted treatment possible.
posted by jedicus at 8:56 AM on August 7, 2012
"Certain characteristics." Thalidomide flippers OK?
A bad example since the risks of thalidomide were not known to the women involved, as far as I know. A better example would be alcohol. A woman should have the legal right to consume alcohol in any amount during pregnancy, regardless of whether she is aware of the risks, and regardless of the possible consequences to the fetus and any resulting child.
posted by jedicus at 9:00 AM on August 7, 2012 [1 favorite]
A bad example since the risks of thalidomide were not known to the women involved, as far as I know. A better example would be alcohol. A woman should have the legal right to consume alcohol in any amount during pregnancy, regardless of whether she is aware of the risks, and regardless of the possible consequences to the fetus and any resulting child.
posted by jedicus at 9:00 AM on August 7, 2012 [1 favorite]
It may be helpful to consider a less emotionally charged scenario in which we can remove a lot of the issues of uncertainty and risk. Suppose there was a cheap, 100% effective, 100% safe way to ensure that a fetus would develop into a child with above-the-current-average height. Would you say that a woman should not have the right to use that treatment? Why or why not? And if she should have that right, then why shouldn't she have the right to a treatment that might avoid a condition like CAH?
To me, the only issues here are (in)effectiveness, risk, and lack of informed consent.
posted by jedicus at 9:05 AM on August 7, 2012 [1 favorite]
To me, the only issues here are (in)effectiveness, risk, and lack of informed consent.
posted by jedicus at 9:05 AM on August 7, 2012 [1 favorite]
> A bad example since the risks of thalidomide were not known to the women involved, as far as I know.
I mean right now today. It really does work on the morning sickness, after all.
posted by jfuller at 11:15 AM on August 7, 2012 [1 favorite]
I mean right now today. It really does work on the morning sickness, after all.
posted by jfuller at 11:15 AM on August 7, 2012 [1 favorite]
"Ah, so people don't have the right to choose a mate in part based on race or lack (or presence) of heritable genetic characteristics? We could require all women to receive only randomized sperm donations, since they have no right to choose what kind of children to have? That's an interesting claim."
I had the impression that you're an attorney. If so, you're simply not arguing in good-faith. If not, I'll point out that a) you seem to be equivocating the legal and non-legal uses of the word right; b) a legal lack of the above "right" is not the equivalent of a legal compulsion to do its opposite (that's absurd and a deeply dishonest argument for you to make); and c) whatever legal basis exists protecting one's choice with whom to reproduce will be/is undoubtedly built around privacy rights and not as a right to choose the characteristics of one's offspring.
"Do they not? I'd be glad to hear we had come so far in educating the public as to the nature of intersex, but I'll bet that most people would assume that it interferes with reproduction, sex, or both. Feel free to dispute this claim with actual facts."
My point was that you were making a general argument that was so expansive as to include that mere factually incorrect bias is sufficient — you widened the door and then widened it further such that it guarantees that every possible example regarding intersex would be covered under your claim but also inadvertently revealing your argument's absurdity and falsity when it's applied, using your terms, to many things other than intersex.
You and others here are also conflating the rights to one's own body with some appealed-to nebulous right to have whatever medical intervention that one desires. But there is no such right. As it happens, I'm inclined to argue that there should be some limited right of this nature because, in truth, many people aren't able to have various procedures done because of cultural biases as manifested in the medical profession, but in these cases working against intervention rather than in favor of it. Nevertheless, there is no such right. The practice of medicine is highly regulated.
"I mean right now today. It really does work on the morning sickness, after all."
Yes. An absolute right as jedicus proposes and corb assumes would include the "right" to demand that one's physician prescribe thalidomide as a treatment for morning sickness.
posted by Ivan Fyodorovich at 12:08 PM on August 7, 2012 [1 favorite]
I had the impression that you're an attorney. If so, you're simply not arguing in good-faith. If not, I'll point out that a) you seem to be equivocating the legal and non-legal uses of the word right; b) a legal lack of the above "right" is not the equivalent of a legal compulsion to do its opposite (that's absurd and a deeply dishonest argument for you to make); and c) whatever legal basis exists protecting one's choice with whom to reproduce will be/is undoubtedly built around privacy rights and not as a right to choose the characteristics of one's offspring.
"Do they not? I'd be glad to hear we had come so far in educating the public as to the nature of intersex, but I'll bet that most people would assume that it interferes with reproduction, sex, or both. Feel free to dispute this claim with actual facts."
My point was that you were making a general argument that was so expansive as to include that mere factually incorrect bias is sufficient — you widened the door and then widened it further such that it guarantees that every possible example regarding intersex would be covered under your claim but also inadvertently revealing your argument's absurdity and falsity when it's applied, using your terms, to many things other than intersex.
You and others here are also conflating the rights to one's own body with some appealed-to nebulous right to have whatever medical intervention that one desires. But there is no such right. As it happens, I'm inclined to argue that there should be some limited right of this nature because, in truth, many people aren't able to have various procedures done because of cultural biases as manifested in the medical profession, but in these cases working against intervention rather than in favor of it. Nevertheless, there is no such right. The practice of medicine is highly regulated.
"I mean right now today. It really does work on the morning sickness, after all."
Yes. An absolute right as jedicus proposes and corb assumes would include the "right" to demand that one's physician prescribe thalidomide as a treatment for morning sickness.
posted by Ivan Fyodorovich at 12:08 PM on August 7, 2012 [1 favorite]
"Let's apply the same reasoning to any other physical abnormality."
Why?
Because your politics are interfering with your ability to think about it rationally.
posted by rr at 1:35 PM on August 7, 2012
Why?
Because your politics are interfering with your ability to think about it rationally.
posted by rr at 1:35 PM on August 7, 2012
I mean right now today. It really does work on the morning sickness, after all.
No because a woman likely couldn't legally obtain the drug for that purpose. That's why I used alcohol as my example, since a pregnant woman (who is of drinking age) can legally obtain alcohol.
Yes. An absolute right as jedicus proposes and corb assumes would include the "right" to demand that one's physician prescribe thalidomide as a treatment for morning sickness.
No, a woman's right to control her own body does not give her the right to compel action by a physician. Put differently, a woman's right to bodily autonomy does not trump the physician's own right to bodily autonomy (i.e. of which the right to be free from involuntary servitude is a part). The woman could certainly ask for, even "demand" such a treatment, but the physician should not be legally compelled to give it.
a legal lack of the above "right" is not the equivalent of a legal compulsion to do its opposite
You are correct. They are not equivalent. That's why I said "[by your logic,] we could require all women to receive only randomized sperm donations" (emphasis added). This is different from saying that "because people have no right to choose what kind of child they will have, we must do the opposite." Only that we could. Saying that we could not do so is tantamount to saying that people do, in fact, have some right to choose what kind of child they will have by choosing the person they mate with.
whatever legal basis exists protecting one's choice with whom to reproduce will be/is undoubtedly built around privacy rights and not as a right to choose the characteristics of one's offspring.
Why is this undoubtedly so? Are you saying it is so as a factual matter or as a normative matter?
And let's say it's built around privacy rights. How do those same privacy rights not extend to a woman deciding to use a treatment to make her child taller or prevent CAH? Why does a woman's right to privacy entitle her to destroy her fetus but not to alter it in a lesser way? Does she not also have the right to do many other things that might alter her fetus in lesser ways (e.g. diet, exercise, deciding that certain approved medications are worth the risk to the fetus)? Why is a treatment for CAH different, apart from the issues of effectiveness, risk, and informed consent?
Nevertheless, there is no such right. The practice of medicine is highly regulated.
The right to be able to receive a treatment is different from the right to actually receive it. I'm arguing that the former exists or should exist, whereas the latter doesn't and probably shouldn't. A woman should have the right to ask for any and all treatments, including those that affect her fetus. A doctor should only give such a treatment after informed consent by the patient, and should have the right to refuse to give such a treatment in any case (e.g. because doing so would not help the patient, in the physician's professional judgment).
Now we come to the issue of "conscience laws." A doctor should have the right to refuse to give a treatment, but that doesn't mean the doctor should be protected from being fired for it. So my position is compatible with also opposing conscience laws.
posted by jedicus at 1:36 PM on August 7, 2012 [1 favorite]
No because a woman likely couldn't legally obtain the drug for that purpose. That's why I used alcohol as my example, since a pregnant woman (who is of drinking age) can legally obtain alcohol.
Yes. An absolute right as jedicus proposes and corb assumes would include the "right" to demand that one's physician prescribe thalidomide as a treatment for morning sickness.
No, a woman's right to control her own body does not give her the right to compel action by a physician. Put differently, a woman's right to bodily autonomy does not trump the physician's own right to bodily autonomy (i.e. of which the right to be free from involuntary servitude is a part). The woman could certainly ask for, even "demand" such a treatment, but the physician should not be legally compelled to give it.
a legal lack of the above "right" is not the equivalent of a legal compulsion to do its opposite
You are correct. They are not equivalent. That's why I said "[by your logic,] we could require all women to receive only randomized sperm donations" (emphasis added). This is different from saying that "because people have no right to choose what kind of child they will have, we must do the opposite." Only that we could. Saying that we could not do so is tantamount to saying that people do, in fact, have some right to choose what kind of child they will have by choosing the person they mate with.
whatever legal basis exists protecting one's choice with whom to reproduce will be/is undoubtedly built around privacy rights and not as a right to choose the characteristics of one's offspring.
Why is this undoubtedly so? Are you saying it is so as a factual matter or as a normative matter?
And let's say it's built around privacy rights. How do those same privacy rights not extend to a woman deciding to use a treatment to make her child taller or prevent CAH? Why does a woman's right to privacy entitle her to destroy her fetus but not to alter it in a lesser way? Does she not also have the right to do many other things that might alter her fetus in lesser ways (e.g. diet, exercise, deciding that certain approved medications are worth the risk to the fetus)? Why is a treatment for CAH different, apart from the issues of effectiveness, risk, and informed consent?
Nevertheless, there is no such right. The practice of medicine is highly regulated.
The right to be able to receive a treatment is different from the right to actually receive it. I'm arguing that the former exists or should exist, whereas the latter doesn't and probably shouldn't. A woman should have the right to ask for any and all treatments, including those that affect her fetus. A doctor should only give such a treatment after informed consent by the patient, and should have the right to refuse to give such a treatment in any case (e.g. because doing so would not help the patient, in the physician's professional judgment).
Now we come to the issue of "conscience laws." A doctor should have the right to refuse to give a treatment, but that doesn't mean the doctor should be protected from being fired for it. So my position is compatible with also opposing conscience laws.
posted by jedicus at 1:36 PM on August 7, 2012 [1 favorite]
"Because your politics are interfering with your ability to think about it rationally."
No, they're not, really. Your attempts at snark are interfering with your ability to present a rational argument though. In particular, I suspect you're making a category error, but you've chosen to be petulant rather than using your words.
posted by klangklangston at 5:59 PM on August 7, 2012
No, they're not, really. Your attempts at snark are interfering with your ability to present a rational argument though. In particular, I suspect you're making a category error, but you've chosen to be petulant rather than using your words.
posted by klangklangston at 5:59 PM on August 7, 2012
Sure (except for the use of illegal drugs; that's specifically excluded from the ADA). Some of them may seem trivial, but that should only affect the level of reasonable accommodation, not whether they should be considered disabilities in the first place.
But the drug dependence can be, and often is, a bigger impediment to reproduction and sex than conditions of intersex or anatomical outliers, so by your argument, regardless of current ADA status, those ought to be classified as disabilities given protection and accommodations.
I don't understand this need, this compulsion, to pathologize differences that are within the normal range of human experience (affecting about 1 in 100 babies) and don't impact an individual's ability to function.
Well it depends on what you mean by "otherwise healthy," doesn't it? And I think that's a big part of the disagreement between me and Ivan. I'm primarily talking about those intersex people for whom the underlying condition produces actual or perceived difficulties with reproduction or sex (e.g. infertility). I think Ivan is taking a more expansive view (e.g. talking about normal human variation). There's a big difference between merely having a smallish penis or a largeish clitoris versus having a condition that also renders the person infertile.
"Primarily" seems like a pretty key word there, and that wasn't apparent (to me) from previous posts. If every person affected by these conditions was rendered necessarily infertile or unable to engage in sexual relations, that would give more weight to classifying those as disabilities, but the primary risks associated with these conditions are social, not medical (see Are there medical risks associated with intersex conditions?).
CAH, specifically, causes problems with production of cortisone and sometimes other hormones, and for this reason it is riskier than other intersex conditions, but that's not an argument in favor of broadly applying a potentially dangerous unproven treatment or for focusing on XX affected patients (who are more likely to be diagnosed due to "virilization") than for the equally-common but not visually differentiated CAH XY affected patients. If the concern is truly about fixing the hormone production issues which can affect quality of life, then the focus should be equally applied to XX and XY patients, but social context is why XX are targeted.
posted by notashroom at 7:51 AM on August 8, 2012 [2 favorites]
But the drug dependence can be, and often is, a bigger impediment to reproduction and sex than conditions of intersex or anatomical outliers, so by your argument, regardless of current ADA status, those ought to be classified as disabilities given protection and accommodations.
I don't understand this need, this compulsion, to pathologize differences that are within the normal range of human experience (affecting about 1 in 100 babies) and don't impact an individual's ability to function.
Well it depends on what you mean by "otherwise healthy," doesn't it? And I think that's a big part of the disagreement between me and Ivan. I'm primarily talking about those intersex people for whom the underlying condition produces actual or perceived difficulties with reproduction or sex (e.g. infertility). I think Ivan is taking a more expansive view (e.g. talking about normal human variation). There's a big difference between merely having a smallish penis or a largeish clitoris versus having a condition that also renders the person infertile.
"Primarily" seems like a pretty key word there, and that wasn't apparent (to me) from previous posts. If every person affected by these conditions was rendered necessarily infertile or unable to engage in sexual relations, that would give more weight to classifying those as disabilities, but the primary risks associated with these conditions are social, not medical (see Are there medical risks associated with intersex conditions?).
CAH, specifically, causes problems with production of cortisone and sometimes other hormones, and for this reason it is riskier than other intersex conditions, but that's not an argument in favor of broadly applying a potentially dangerous unproven treatment or for focusing on XX affected patients (who are more likely to be diagnosed due to "virilization") than for the equally-common but not visually differentiated CAH XY affected patients. If the concern is truly about fixing the hormone production issues which can affect quality of life, then the focus should be equally applied to XX and XY patients, but social context is why XX are targeted.
posted by notashroom at 7:51 AM on August 8, 2012 [2 favorites]
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