And what about institutional ethics oversight in this case? Yang, Felsen, and Poppas report IRB approval for retrospective chart review, but apparently have no IRB approval for the post-op “sensory testing.”
I think it's fair for girls to get this (warning: image of CAH genitalia in a newborn girl) changed with plastic surgery, but I don't agree with doing it before they're able to make the choice themselves*, and I certainly don't fucking agree with taking vibrators to a six year old girl's privates, with or without her parents present. My nieces are five and seven, and the idea of any person -- medical degree or otherwise -- doing that makes me want to grab a head-bashing shovel.
* Is there some legitimate medical reason why doing it before that age is vital? I don't know enough to say.
The people that I know who were born intersex or with ambiguous genitalia are old enough that surgery in infancy or childhood was still the norm (I think this is changing).
Every one of them that I've discussed the topic with has said that they would have vastly preferred to have been able to wait until they were old enough to make the decision themselves. My sample size is small (like, three) and anecdotal, but still.
Were it penises involved in such "research" there'd be screams of Mengele ricocheting off the walls of churches and governments... which goes a long way toward illustrating the upfuckedness of the medical-pharma complex in the US of A.
Look, all else aside, I can understand why a girl born with CAH genitalia (warning: image of said, caused by massive hormonal imbalances) would want cosmetic surgery, much the same as many people with cleft palates, elephantiasis, &c, do. People notice, people are cruel, and it becomes psychologically damaging. I would not care if my partner had markedly atypical genitalia, but how I (or anyone else who isn't the girl with the genitals in question) feel is irrelevant. I think the procedure, in theory, is valid and fair.
But the way it's being done here really, really isn't. It is really fucking wrong.
One of the troubling aspects of these protocols are the asymmetric ways they treat femininity and masculinity. For example, physicians appear to do far more to preserve the reproductive potential of children born with ovaries than that of children born with testes. While genetically male intersexuals often have infertile testes, some men with micropenis may be able to father children if allowed to retain their testes.
Similarly, surgeons seem to demand far more for a penis to count as “successful” than for a vagina to count as such. Indeed, the logic behind the tendency to assign the female gender in cases of intersexuality rests not only on the belief that boys need “adequate” penises, but also upon the opinion among surgeons that “a functional vagina can be constructed in virtually everyone [while] a functional penis is a much more difficult goal.” This is true because much is expected of penises, especially by pediatric urologists, and very little of vaginas. For a penis to count as acceptable”functional”-it must be or have the potential to be big enough to be readily recognizable as a “real” penis. In addition, the “functional” penis is generally expected to have the capability to become erect and flaccid at appropriate times, and to act as the conduit through which urine and semen are expelled, also at appropriate times. The urethral opening is expected to appear at the very tip of the penis. Typically, surgeons also hope to see penises that are “believably” shaped and colored.
Meanwhile, very little is needed for a surgically constructed vagina to count among surgeons as “functional.” For a constructed vagina to be considered acceptable by surgeons specializing in intersexuality, it basically just has to be a hole big enough to fit a typical-sized penis. It is not required to be self-lubricating or even to be at all sensitive, and certainly does not need to change shape the way vaginas often do when women are sexually stimulated. So, for example, in a panel discussion of surgeons who treat intersexuality, when one was asked, “How do you define successful intercourse? How many of these girls actually have an orgasm, for example?” a member of the panel responded, “Adequate intercourse was defined as successful vaginal penetration.” All that is required is a receptive hole.
I've known for some time about the problems with intersexed babies being surgically sexed by doctors, often before the parents even know...but this really makes me want to puke. Having known intersexed people I just can't imagine doctors making these decisions about gender at birth. ARGH
Are you suggesting that this doctor, by testing for (normal?) sensitivity in his cosmetic surgery cases, is bucking the trend where doctors consider an appealing warm hole to be all a woman would ever want?
I totally agree that this is a fucked up world where supposedly intelligent people can, with a straight face and certainty in their hearts, impose cosmetic surgeries for the greater good of everyone. Like with universal circumcision -- some years it's all the rage, other years not, in the end it's just something we do to babies because we think it's alright. Each time I see a toddler with a pierced ear I wonder about just what kind thought process makes that OK a not a case of child abuse.
That it probably would be the best to wait and let the recipient of potential surgery (assuming they ever want or need it -- the said article notes the feelings of several intersexed people on this issue, and a major streak seems to be "no, I wish they hadn't done that") to decide on their own if they need and want it, instead of rushing to "normalize" someone's genitalia which falls outside of perceived parameters. Unless there's really good medical reasons for reconstructing genitals or performing other surgery on them, it should be avoided as much as possible.
CAH is a separate issue -- but, as noted in that quoted article above, genital differences aren't always something which also needs ZOMG immediate surgery now.
“Ambiguous” genitalia do not constitute a disease. They simply constitute a failure to fit a particular (and, at present, a particularly demanding) definition of normality. It is true that whenever a baby is born with “ambiguous”genitalia, doctors need to consider the situation a potential medical emergency because intersexuality may signal a potentially serious metabolic problem, namely congenital adrenal hyperplasia (CAH), which primarily involves an electrolyte imbalance and can result in “masculinization” of genetically female fetuses. Treatment of CAH may save a child’s life and fertility At the birth of an intersex child, therefore, adrenogenital syndrome must be quickly diagnosed and treated, or ruled out. Nonetheless, as medical texts advise, “of all the conditions responsible for ambiguous genitalia, congenital adrenal hyperplasia is the only one that is life-threatening in the newborn period,” and even in cases of CAH the “ambiguous” genitalia themselves are not deadly.
As with CAH’s clear medical issue, doctors now also know that the testes of AIS patients have a relatively high rate of becoming cancerous, and therefore AIS needs to be diagnosed as early as possible so that the testes can be carefully watched or removed. However, the genitalia of an androgen-insensitive person are not diseased. Again, while unusual genitalia may signal a present or potential threat to health, in themselves they just look different. As we have seen, because of the perception of a “social emergency” around an intersex birth, clinicians take license to treat nonstandard genitalia as a medical problem requiring prompt correction. But as Suzanne Kessler sums up the situation, intersexuality does not threaten the patient’s life; it threatens the patient’s culture.
Somewhere further below,
Second, and more basically, it is not self-evident that a psychosocial problem should be handled medically or surgically. We do not attempt to solve the problems many dark-skinned children will face in our nation by lightening their skins. Similarly, Cheryl Chase has posed this interesting question: when a baby is born with a severely disfigured but largely functional arm, ought we quickly remove the arm and replace it with a possibly functional prosthetic, so that the parents and child experience less psychological trauma? While it is true that genitals are more psychically charged than arms, genitals are also more easily and more often kept private, whatever their state. Quoting the ideas of Suzanne Kessler, the pediatric urologist Schober argues in a forthcoming work that “Surgery makes parents and doctors more comfortable, but counseling makes people comfortable too, and [it] is not irreversible.” She continues: “Simply understanding and performing good surgeries is not sufficient. We must also know when to appropriately perform or withhold surgery. Our ethical duty as surgeons is to do no harmand to serve the best interests of our patient. Sometimes, this means admitting that a ‘perfect’ solution may not be attainable.”
So you are not agreeing or disagreeing with anything I said in my comment, but are agreeing with the variation on my comment that I made a few threads up, where I said I think it's best to wait until the child is old enough to make the decision for themselves. Check. :)
It isn't even 9 am, and now I feel like I should start drinking something with lots of kick in order to forget that yes, the world is fucked up like that and fucking fuckheads fuck it up for the rest of us.
I feel so bad for those girls. Pretty much no matter what happens, they're going to come away with psychological damage because of their condition. Sad, because I suspect their parents were trying to get the surgery done at birth to spare them that, and if this fucked up doctor hadn't decided to take research into his own hands at their expense, it might even have worked for some of them. I hope that asshole gets his license revoked, at the very least.
Because pedophilia isn't illegal. Certain acts associated with it are, though, and this is certainly enough to warrant a visit from the nice men in blue.
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(no subject)
Date: 2010-06-17 03:48 am (UTC)...what.
(no subject)
Date: 2010-06-17 03:51 am (UTC)(no subject)
Date: 2010-06-17 04:19 am (UTC)(no subject)
Date: 2010-06-17 03:57 am (UTC)I feel sick.
(no subject)
Date: 2010-06-17 04:03 am (UTC)What the hell kind of IRB passed this "research"?
(no subject)
Date: 2010-06-17 04:18 am (UTC)(no subject)
Date: 2010-06-17 04:26 am (UTC)(no subject)
Date: 2010-06-17 04:52 am (UTC)Call me crazy but I find the operation itself ethically reprehensible.
(no subject)
Date: 2010-06-17 05:04 am (UTC)* Is there some legitimate medical reason why doing it before that age is vital? I don't know enough to say.
(no subject)
Date: 2010-06-17 02:05 pm (UTC)Every one of them that I've discussed the topic with has said that they would have vastly preferred to have been able to wait until they were old enough to make the decision themselves. My sample size is small (like, three) and anecdotal, but still.
(no subject)
Date: 2010-06-17 04:15 am (UTC)(no subject)
Date: 2010-06-17 04:40 am (UTC)Seething, wanting to pummell....
(no subject)
Date: 2010-06-17 04:47 am (UTC)(no subject)
Date: 2010-06-17 05:05 am (UTC)They're just doing it for her benefit, you see.
*puke*
(no subject)
Date: 2010-06-17 05:05 am (UTC)(no subject)
Date: 2010-06-17 06:42 am (UTC)But the way it's being done here really, really isn't. It is really fucking wrong.
(no subject)
Date: 2010-06-17 12:30 pm (UTC)For example,
(no subject)
Date: 2010-06-17 01:11 pm (UTC)(no subject)
Date: 2010-06-17 02:03 pm (UTC)(no subject)
Date: 2010-06-17 02:13 pm (UTC)...yeah, this is so, based on that article quoted above.
Of course, the underage surgery is still all shades of fucked up.
It is a really fucked up world, and I'm going to huggle my bottle of rum and coconut-pineapple juice and get comfortably numb.
(no subject)
Date: 2010-06-17 03:19 pm (UTC)(no subject)
Date: 2010-06-17 03:43 pm (UTC)(no subject)
Date: 2010-06-17 04:02 pm (UTC)CAH is a separate issue -- but, as noted in that quoted article above, genital differences aren't always something which also needs ZOMG immediate surgery now.
Somewhere further below,
(no subject)
Date: 2010-06-17 04:17 pm (UTC)(no subject)
Date: 2010-06-17 05:36 am (UTC)Well, when you put it THAT way.
(no subject)
Date: 2010-06-17 05:59 am (UTC)...
It isn't even 9 am, and now I feel like I should start drinking something with lots of kick in order to forget that yes, the world is fucked up like that and fucking fuckheads fuck it up for the rest of us.
(no subject)
Date: 2010-06-17 07:06 am (UTC)(no subject)
Date: 2010-06-17 07:54 am (UTC)(no subject)
Date: 2010-06-17 08:52 am (UTC)(no subject)
Date: 2010-06-17 01:48 pm (UTC)(no subject)
Date: 2010-06-17 12:11 pm (UTC)What. The. Fuck.
(no subject)
Date: 2010-06-17 03:00 pm (UTC)