intersexuality

The Bioethics of Clitoral "Reduction" Alone Is Questionable Enough. Now This?

Mon, 2010-06-21 14:59

Via an email tip from reader HW, Alice Dreger and Ellen K. Feder of The Hastings Center’s Bioethics Forum call out a… peculiar form of aftercare for children who’s parents have subjected them to surgery to correct clitorises that are “too large.” They’re talking about an article in the Journal of Urology from 2007 called “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability” by Jennifer Yang, Diane Felsen, and Dix P. Poppas.

Dreger and Feder say

Writing in the typically dry, quantifying language of modern medicine, the authors report why they believe Poppas, a pediatric urologist at New York Presbyterian Hospital, Weill Medical College of Cornell University, has left a group of girls still able to have sexual sensation after he has removed parts of the girls’ clitorises. With parental consent, these girls’ clitorises have been cut down in size after the physician deemed these clitorises too big.

...

But we are not writing today to again bring attention to the surgeries themselves. Rather, we are writing to express our shock and concern over the follow-up examination techniques described in the 2007 article by Yang, Felsen, and Poppas. Indeed, when a colleague first alerted us to these follow-up exams – which involve Poppas stimulating the girls’ clitorises with vibrators while the girls, aged six and older, are conscious – we were so stunned that we did not believe it until we looked up his publications ourselves.

Read the quote in context here.

They continue

Although we have tried, we have been unable to locate any other pediatric urologist who uses these techniques. Indeed, we doubt many would, because we think most would – as we do – find this technique to be impossible to justify as being in these girls’ best interests. We understand that these tests might produce generalized knowledge that shows whether Poppas’s techniques are better than some other surgeons’, but it isn’t clear to us how this kind of genital touching post-operatively is in individual patients’ best interests. If the testing shows a girl has lost sensation through the surgery, her lost clitoral tissue cannot be put back. However, the tests would seem to expose the girls to significant risk of psychological harm.

In the course of our inquiries, made in preparation for this publication, nearly all clinicians to whom we described Poppas’s “clitoral sensory testing and vibratory sensory testing” practices thought them so outrageous that they told us we must have the facts wrong.

I think that’s about right. Leaving aside the much larger bioethical question of tampering with the genitals of children who are perceived to be intersexed before they themselves are old enough to participate in the decision, let alone before they’re old enough to determine for themselves what their preferred sex, gender, orientation, and identities are there’s the whole question of… how the heck this follow-up experimentation is ethically justified?

Intersection at the Track: Caster Semenya

Thu, 2009-09-10 19:17

Paleoanthropologist and geneticist John Hawks says of the determination that runner Caster Semenya has internal testes…

None of the reports I’ve found say anything about karyotype. The spokesman’s comments raise the question of culpability versus performance advantage. Semenya’s testosterone-fueled development is arguably a competitive advantage over other women. But she’s done nothing wrong; she did not seek out this advantage. Yet girls in many countries diagnosed with internal testes would usually have them surgically removed — would their parents refuse the surgery if it neutralized a possible sports career? What triggers eligibility, anyway?

He said it here.

Notes: Karyotype is the term for chromosomal complement. In other words they’re not saying whether she has XX or XY chromosomes.

There’s not a whole lot of new information about other people with internal testes but I did find a very positive post by Mary Hanan of ABC News about another woman who, like Semenya, learned she had internal testes instead of ovaries as a result of Androgen Insensitivity Syndrome. (The upshot? Whatever her chromosomal sex she’s not a “man.”)

True Diagnosis

[Musician Eden] Atwood is not a freak — nor is she half-man, half-woman. But her DNA says she’s a man. That’s because she has male chromosomes, an X and a Y, instead of two Xs, like most females. It’s a disorder of sexual development in the womb called Androgen Insensitivity Syndrome, or AIS. It can be passed down through the mother or occur as a spontaneous mutation.

“There are probably about seven-and-a-half thousand people, women, in the U.S. with the condition,” said Dr. Charmian Quigley, a pediatric endocrinologist.

Despite the male chromosomes, Quigley said, women with AIS are just that — women.

“They have a vagina, like anybody else’s,” she said, “but it’s basically just a pouch, it’s not connected to a uterus. There is no uterus. But what they have internally is testes that you would typically find in a male.”

It turns out the doctors had lied to Atwood about having twisted ovaries. She really had internal testicles.

Androgen Insensitivity Syndrome

All of us, men and women, have a mix of male and female hormones running through our systems. And as you might expect, the testes of women with AIS produce huge amounts of the typically male hormone testosterone. But here’s the hitch: their bodies can’t process any of it. And amazingly, they turn it into the typically female hormone estrogen, giving them much more estrogen than the average woman.

These women don’t get acne, and have no body odor and minimal sweating. In essence, they are the furthest thing from a male that there could be.

So, why keep it a secret from them? Quigley explained that there was a concept that “if you told them that they had a Y chromosome, or a testicle inside them, but they were externally female, they would completely meltdown.”

She even showed ABC News a 1970s medical textbook that says, “It is of no benefit to disclose that the gonads were testes instead of ovaries.”

It’s a lie doctors have been telling since about 1953, when the syndrome was formally identified. For Atwood, it was the discovery of that lie that shattered her self-image and drove her to sleep with many men in an effort to prove her femininity.

And as for the act of sex, it’s pretty much the same. Women with AIS can have orgasms just like the rest of us. But they say the lies about their conditions can interfere with intimacy and become far more toxic than the actual diagnosis.
Read the quote in context here.

Please note, though, that at least so far no one’s saying what sex chromosomes Symenya has. Nor have they said she has AIS. (If she does have it then it wouldn’t matter how much testosterone her gonads were producing.) Nor are the only possible sex-chromosome combinations XX or XY. And even if she does there can be other factors present.

The Intersex Society of North America has a great FAQ on the many possible combinations, some of which may, or may not apply to Semenya.

One thing the ISNA, and Mary Hanan’s ABC News article, does talk about? The fact that a lot of parents and their doctors know their children’s intersexed status very early on… and the devastating effect of lying to or otherwise keeping your children in the dark can have on them when, as looks like the case with Semenya, the news gets dumped on you in adulthood.

Just sayin’

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