18 Responses to On all sorts of wrong

  1. Austin Elliott says:

    Agreed – truly jaw-dropping stuff. I think the reported astonishment/disbelief of all the other clinicians Dreger and Feder asked about the work is telling.

  2. Richard P. Grant says:

    That’s crucial, Austin. I have people on Twitter (and the other place trying to tell me it’s not so bad, that it’s a ‘medical condition’ that needs treating, whereas in fact it’s a damning indictment of medical (shall we say it? why not) patriarchal hegemony, actually.

  3. Åsa Karlström says:

    eh… what I don’t get at all is why this is done on small girls? I mean, aren’t all our parts subject to growth and change until we are in our late teens? Can they really tell that the genitalia will look like “that” (what ever it is) all life? And is it really that relevant to change?
    (I might be too graphic here but is there very many places where people see your genitalia when you are younger? Where these people have a right to state what is right and wrong? I guess there could be some cases with ‘semi-penis’ size which may or may not be hard to conceile in a swim siut, but that begs to question… is that really wrong? If it’s functioning, would you ‘fix’ it? I mean, girls with small breats when they are 13 comes to mind… you don’t “fix” them, do you? We all come in various sizes and shapes with the boobs and the genitalia and, I guess it says more about my naivite, I thought that was just “being human?”)
    I guess it stems partly from what is mentioned in one of the links “parents are scared their child will be bullied for looking different and therefore do not want to refrain from this available surgery” [my interpretation of a longer qoute]. But this is not thinking that we all look different and in doing this it’s implied that “looking not as X is wrong and less worth”?
    I don’t know, I’m hoping there is some background here that I am missing, but the story as is made me uncomfortable. Qtips?Really not sure where I would’ve ended up if someone asked those kind of questions when I was 4…

  4. Åsa Karlström says:

    sorry, the “girls were older than 6” in terms of Qtips etc. That doesn’t really make me much more comfortable but I wanted to be correct in my citation.

  5. Richard P. Grant says:

    Yeah. The debate about mutilating cross-sexed people, or reducing a ‘large’ clitoris, is ongoing, with people getting quite agitated on both sides.
    However, it’s important to note that the original post was calling out the followup procedures, which seem not to have ethical approval, and may well do deep psychological harm.
    (Now I’ve calmed down a bit I can think about this a bit more.)

  6. Åsa Karlström says:

    Richard> I read that part that it’s either research or it is “post op controls” and see that this is what they want to focus on and get IRB involved.
    I understand that there is a huge thing with these operations and ambigious sexed people. I guess I just got affected by the image in my head of being young and laying down when someone is touching places with things and asking what I feel… and then as a grown up being reminded about it with someone I would care about… very strange indeed.
    I’m a bit surprised they didn’t scrutinize the whole thing (post op stuff) very well since it is such a complicated issue and most likely (as I’ve shown) easy to get upset about the other things in the story. After all, most people don’t question the physcian who is in charge of helping their family member, let alone thier child.

  7. Nicolas Fanget says:

    Finally picked up jaw from floor, the amount of wrong in there is just flabbergasting. How could this go past an ethics committee? DID IT go past an EC? that would make it even worse!

  8. Richard P. Grant says:

    It appears, checking out those links, that IRB approval was obtained for “retrospective chart review, a harmless little look back at what he recorded in the charts as having happened to his patients.”
    Not masturbating young girls in the clinic.

  9. Kristi Vogel says:

    IANAS, but I’m not clear on why the followup procedures are necessary, apart from validating one’s surgical prowess – what if the nerves weren’t spared? They can’t be repaired, once damaged or removed. Seems to me it’s only “justifying” a surgical procedure that imposes our cultural/sociological dichotomy of gender upon an underlying biology of sex that is not so dichotomous – perhaps more of a continuum or spectrum, especially from a developmental perspective. That makes things more complicated, of course, and a busy surgeon might not like that. I realize that there’s a lot of societal pressure to have children conform to the gender/sex dichotomy (what’s the first question people ask new parents, if the sex of the baby wasn’t known or revealed during the pregnancy?), but that doesn’t give anyone the right to mutilate children in such a manner.
    I remember when the “funny” Y chromosome map was published (in Science, I think), joking with some other XX colleagues about having translocations of the remote control gene, or the barbecue gene, or the automobile obsession gene. Underlying those jokes, though, which are admittedly somewhat insensitive to make if you fit neatly within the dichotomies, are numerous very serious issues of gender and sex.

  10. Richard P. Grant says:

    What Kristi said.

  11. Robin Gill says:

    This is horrifying. I’m afraid I can’t see why any sort of social conformity should require this sort of butchery, irrespective of the size of the organ in question. We can’t decry female genital mutilation for ‘cultural reasons’ in other parts of the world while continuing to practise it ourselves.
    As to the post-op genital stimulation, well, in any other context that would (rightly) be called child sexual abuse. It makes no difference that parents consent and are present; indeed, I’d think that this would make the experience even more traumatic.

  12. Austin Elliott says:

    I’ve been trying to “unpack” this a little.
    First, a hunt round PubMed reveals (to my amazement) that this operation is actually not all that uncommon for those with intersex conditions (typically resulting from virilizing congenital adrenal hyperplasia in genetic females). I am especially shocked that it seems to be done on kids so young, though, with reports from surgeons other than Poppas also suggesting that the operation is often done when a girl is under five.
    I find that deeply troubling, for the reasons others here have already stated. I can’t think of any obvious medical/physiological reason for the surgery. I guess it may be justified as “the child won’t want to feel they look different”, but whether children are really aware of such things… they are hardly likely to be aware of the “cultural meaning” (if I can use the phrase) of how their genitals look until they are considerably older – at least, beyond the basic boy/girl difference, which obviously kids are aware of very early on. So really it seems to be parents’ views (prejudices?) that are the issue. One would also wonder whether the parents might be strongly influenced by doctors saying “no problem, we can fix this”.
    Anyway, for the parents to make such a drastic decision for the child for largely cultural reasons makes me very uneasy. And of course doing the operation in the first place on children so young completely bypasses the issue of consent and autonomy, which are the central concepts in modern medical ethics.
    I suppose the likelihood is that doing the operation on girls so young is rationalised on the basis that the child likely will retain no conscious memory of it. Of course, once the operation being done so young is considered normal practise, then following up the operation to see how “successful” it is judged to be (in terms of clitoral nerve function) might be seen by the surgeon as a good thing to know. So part of the lesson here might be “the road to Hell is paved with good intentions”
    However… even if one were to accept this might be useful information for future parents considering the operation for their child, it opens several other cans of worms. As Kristi says, the kids being followed up are not benefitting, as there is no prospective treatment if nerve damage is found. So the follow up looks like a research study by any modern definition, and one with obvious potential for psychological damage to the children.
    Presumably the alternative to operating at all is to treat the underlying endocrine problem and wait and see what happens. After all, anatomy at age

  13. Austin Elliott says:

    PS Sorry about the mammoth comment. I could have posted it separately on my blog but it always seems more sensible to keep the discussion centred in one place.

  14. Richard P. Grant says:

    no need to apologize, Austin. Your insight is as welcome as ever.

  15. Kristi Vogel says:

    Austin’s comment confirmed what I gathered from looking at one of the articles that Richard linked in his post – the surgery is most often performed to “correct” ambiguous genitalia caused by fetal CAH. In this case, the surgery effectively forces the child to conform anatomically to our notions of two distinct biological sexes (this is what I meant by social conformity, Robin – sorry if I wasn’t clear in my first comment). If the child can urinate normally/without difficulty, I really don’t understand why the surgery should be performed at such a young age.
    Why not wait until the individual can make an autonomous decision, rather than impose a female identity (not to mention the unethical and undoubtedly traumatic post-surgery “research”)? What if the individual with CAH would later self-identify as male, or would be content to remain “as is” … but the surgeon has already altered the individual’s external anatomy? The whole thing is an especially egregious example of interfering to force individuals to conform, rather than taking the time and effort to educate about differences and human variation.

  16. Richard P. Grant says:

    Somebody here just sent me the JCEM article. It’s quite confusing to me. It looks like one of the things they measure is sexual satisfaction. And there’s a crude comparison of non-operated vs operated (funnily enough, operated = less satisfaction) but no further breakdown. It’s almost like a homeopathy paper where they compare various ‘treatments’ but without including a proper control. :/

  17. Robin Gill says:

    Kristi, yes, I understood that’s what you meant, and I absolutely agree with everything you’ve said. I’ve also learnt from my scouting around that this procedure (paraphrasing Austin and my other researches) is “not uncommon”. It seems to me that it should be extremely uncommon.
    Here is the New York Presbyterian Hospital’s take on CAH. The part I find most disturbing is:

    In some infant girls who have ambiguous genitalia, reconstructive surgery may be required to correct the appearance and function of the genitals, a procedure that may involve reducing the size of the clitoris and reconstructing the vaginal opening.

    In some infant girls. Not boys, you’ll notice. Never mind the phrase “correct the appearance” of the genitals. Like Kristi, I concede that there might be medical reasons for correcting the function, if this refers to urination, for example. Any other function (menstruation/sexual activity) can be dealt with later when the patient is capable of having at least some understanding of what the surgery will entail.
    The more I learn about this procedure, the more disgusted I become. I can’t even begin to think about the (possible?/probable?) psychological effects of the post-op ‘research’.

  18. Maxine Clarke says:

    A colleague sent me a reference to a review,
    with this excerpt:
    D. Corrective surgery
    The general approach to evaluating the newborn with ambiguous genitalia has been discussed in Section IV.A. In general, the recommended sex assignment should be that of the genetic/gonadal sex, if for no other reason than to retain the possibility of reproductive function. This is especially true for females with 21-hydroxylase deficiency who have normal internal genital structures and potential for child-bearing. An exception to this rule might be the genetically female patient with completely male appearing genitalia, especially if the child has been raised as a male for more than a few months. Such children will need to be castrated at puberty to avoid feminization.
    Whether, how, and when to intervene surgically in the correction of genital anomalies is the subject of continuing debate (279, 280). Some adult patients with CAH and other intersex conditions who are unhappy with their gender assignment, as well as some physicians, have advocated postponing genital surgery until the affected individual is able to provide informed consent for cosmetic genital surgery, and select the gender with which he/she will be most comfortable (279, 281–283). It is not clear, however, whether families would readily accept the idea of raising a child with indeterminate gender and/or ambiguous genitalia, whether children would then be psychologically traumatized due to lack of societal acceptance of such conditions, and whether such children would be able to develop an unambiguous gender identity at all.
    It must also be recognized that recommendations for sex assignment are to some extent culture specific. In cultures that value infant boys over girls, parents may strongly resist rearing a female with ambiguous genitalia as a girl, and many girls with severely virilized external genitalia will be raised as males (152, 153).
    The most common current approach to surgical correction is for clitoroplasty (284, 285), rather than clitoridectomy, to be done in infancy. In adolescence the patient can be taught to perform vaginal dilation with acrylic molds (286, 287). Vaginal reconstruction is often postponed until the age of expected sexual activity (288, 289), but single-stage corrective surgery has also been successfully performed in children (284, 290, 291). Correction in infancy may be more successful for cases of simple labial fusion than in cases where the distal vagina must be reconstructed (289, 292). Newer modifications in vaginoplasty procedures may improve outcome in patients with urogenital sinus for whom simple dilation is not helpful (286, 293, 294). According to self-assessment surveys among sexually active women with CAH, approximately 60% are able to have satisfactory intercourse (295). Reoperation is frequently required to achieve satisfactory results (292).
    As surgical and medical treatment regimens have improved in recent years, more women with CAH have successfully conceived spontaneously, completed pregnancies, and given birth (296). Most often delivery is by cesarean section due to an inadequate introitus, but vaginal delivery is possible in some cases (109).

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