Talk:Intersex surgery

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1. abnormal is an objective term that is used to describe any deviation from usual; substituting several words that together are less clear is not an improvement of either style or truth.

2. Your substitution suggests a politically motivated denial of simple fact in order to push a specific opinion on a recently advocated but unproven management approach. I have tried to do justice to the controversy, but have tried to present your view as one of several different perspectives since at present we have neither social consensus nor long-term outcome evidence of superiority. Would you describe cosmetic surgery to remove a blood vessel malformation of the skin a procedure to "make the skin more socially acceptable"? You might in some contexts, but not in the intro to an encyclopedia article.

3. I added a sentence in the controversies section to represent what I suspect is your viewpoint: Within the last decade, some people have raised the question of whether surgery to correct abnormal genitalia should be done at all. Opponents of all "corrective surgery" on abnormal genitalia suggest we should be attempting to change social opinion regarding the desirability of having genitalia that look more average, rather than performing surgery to try to make them more like other peoples'. Is this a fair representation? Alteripse 00:45, 13 Nov 2004 (UTC)

Contents 1 recent changes 2 "abnormal" 3 rationales for appearance-altering surgery 4 Money theory remained dominant until less than a decade ago 5 another missing issue

[edit] recent changes

A couple of user:cherylchase's recent changes are excellent (especially the point that perhaps doctors and parents consider a gender identity change the worst outcome). However, a couple are not. The listing of goals is not the place to make unsubstantiatable accusations of "unclear thinking". You may disagree with the goals as is, and should be, clearly explained in the article, but the surgeons who do the surgery and the parents and patients who consent to it can usually formulate exactly what outcomes they are wishing for. There is rarely anything unclear about the intentions of surgery. I have attempted to make it very clear that some of the purposes are controversial this can even be emphasized further as one perspective on this issue, though not as the only perspective on this issue. Much less controversial is the fact that not all the goals (e.g., sexual function) are achieved in a large proportion of cases. This is explicitly stated, and elaborated even further in the article on history of intersex surgery. May I suggest going a piece at a time about the things you would like to change, and explaining on talk page? That is the usual custom here for articles with content that may be controversial. Thanks. alteripse 22:45, 3 May 2006 (UTC)

[edit] "abnormal"

"abnormal" is a term that describes larger than usual penises, and smaller than usual clitorises. But these deviations from usual do not create a wish for surgery on the part of parents or doctors. There's a useful clue in that lack of symmetry about what is prompting surgery. Cherylchase 17:00, 5 May 2006 (UTC)

Pediatric endocrinologists spend time every day sorting out "atypical" or "abnormal" patterns of physical development from disease (tall, short, early, late, heavy, thin, big body parts, small body parts, too much hair, too little hair, etc). They are quite familiar with the concept of "abnormal but healthy and not in need of intervention." They are also familiar with people who are "happy that there is no disease but can you make it more normal anyway?" However, I am not following your clue. alteripse 22:29, 5 May 2006 (UTC)

The clue is that what motivates the surgery is not simply a wish to correct an abnormality, but rather a wish to correct blurring of sex. A clitoris that is smaller than average, or even absent, goes unremarked, but a clitoris that is larger than average is a candidate for surgery. Likewise, larger than average penises are not candidates for surgery (or even for distress), but smaller than average penises are.

The language that doctors use to describe larger than average clitorises and smaller than average penises is emotionally charged, and asymmentric. Borrowing from (Kessler 1998):

The excision of a hypertrophied clitoris is to be preferred over allowing a disfiguring and embarrassing phallic structure to remain. (Gross 1966)

[P]atients with obtrusive clitoromegaly have been encountered . . . [N]ine females had persistent phallic enlargement that was embarrassing or offensive and incompatible with satisfactory feminine presentation or adjustment. (Randolph 1981)

Female babies born with an ungainly masculine enlargement of the clitoris evoke grave concern in their parents . . . [The new clitoroplasty technique] allow[s] erection without cosmetic offense. (Newman 1992)

Failure to [reduce the glans and shaft] will leave a button of unsightly tissue. (Kogan, S 1983)

[Another surgeon] has suggested . . . total elimination of the offending shaft of the clitoris. (Randolph 1970)

[A particular surgical technique] can be included as part of the procedure when the size of the glans is challenging to a feminine cosmetic result. (Allen 1982)

The language used to describe small penises has a very different emotional valence:

a boy with this insignificant organ . . . doomed to life without a penis. (Newman 1992)

the most heartbreaking maladjustment attends those patients who have been raised as males in teh vain hope that the penis will grow (Newman 1992)

Large clitorises are ugly, offensive. Small penises are pitiful.

Kessler, S. (1998). Lessons from the Intersexed. New Brunswick, New Jersey, Rutgers University Press.

Gross, R. E., J. Randolph, et al. (1966). "Clitorectomy for Sexual Abnormalities: Indications and Technique." Surgery 59(2): 300-8.

Randolph, J., W. Hung, et al. (1981). "Clitoroplasty for Females Born with Ambiguous Genitalia: A Long-Term Study of 37 Patients." Journal of Pediatric Surgery 1(6): 882-887.

Newman, K., J. Randolph, et al. (1992). "The Surgical Management of Infants and Children with Ambiguous Genitalia: Lessons Learned from 25 Years." Annals of Surgery 215(6): 644-653.

Kogan, S., P. Smey, et al. (1983). "Subtunical Total Reduction Clitoroplasty: A Safe Modification of Existing Techniques." Journal of Urology 130(October): 746-748.

Randolph, J. and W. Hung (1970). "Reduction clitoroplasty in females with hypertrophied clitoris." Journal of Pediatric Surgery 5: 224-230.

Allen, L., B. Hardy, et al. (1982). "Surgical management of the enlarged clitoris." Journal of Urology 128: 353.

Cherylchase 05:44, 6 May 2006 (UTC)

I am truly shocked at this. The motives you impute for surgery are ridiculous and the worst kind of dishonest ideological cant. The difference between trying to correct a small penis or a large clitoris but not a large penis or a small clitoris is very simple: no one is asking doctors to correct a large penis, not because doctors are the "enforcement agents for a heterosexist hegemony" (to use one of the more absurd caricatures). Re-read my paragraph: it is really the way we think about physical anomalies. If the patient or parent doesn't consider a large or small phallus a problem, we usually don't either. You can find just as "emotive" language in medical texts describing cleft lips. And of course it is "asymmetric": check out the numerous websites devoted to distress about gynecomastia, hirsutism, and penis size. There are no websites emotively describing the anguish of a boy with no breast development or a girl with no lip hair. You want to blame the doctors because most males want to be more "male" and most "females" want to be more female, or their parents want that for them?

In terms of trying to avoid "blurring" of physical sexual characteristics, our patients seek help to do so far more often than we suggest it. What do you think is the reason we see so many adolescent girls distressed over their lip or arm hair or small breasts, or boys distressed over pubertal gynecomastia? We have 100 conversations with patients or families about how some unwanted "cross-sex" characteristic is normal for every 1 conversation where we try to persuade someone that a feature is too feminine or too masculine to go untreated. And guess what: if people still want help changing it, we tell them about hair removal specialists or surgeons.

The many doctors who support ISNA are willing to ignore this type of insulting silliness. If you want to know how ISNA can improve communication with the others, ask them why they do something instead of making up stupid motives. alteripse 16:40, 6 May 2006 (UTC)

[edit] rationales for appearance-altering surgery

"Opponents of all 'corrective surgery' on abnormal genitalia suggest we should be attempting to change social opinion regarding the desirability of having genitalia that look more average, rather than performing surgery to try to make them more like other peoples" is not quite right. I think that coming to some agreement first on what are the rationales for surgery will let us make more progress on an accurate characterization of the views of opponents of all appearance-altering surgeries.

I'm going to discuss here the earliest articulated rationale for surgery. The rationales have shifted over the years; we can discuss later rationales after this one.

The famous 1955 papers by Money, Hampson, and Hampson say that there are two reasons why early surgery to normalize the appearance of the genitalia is necessary. First, the child could not develop a gender identity concordant with the sex assigned unless the genitals had an appearance congruent to the sex assigned, and that this should happen before the child is 18 months old. Second, the articles say that gender identity is socially determined, largely through interaction with the parents. Thus, the parents must believe that the child has a "true sex" which the doctors have uncovered and which is congruent with the sex assigned. Unless the genitals have an appearance normal for the sex assigned, the parents will not believe that is the true sex, and they will not be able to interact with the child in such a way as to cause the child to develop a concordant gender identity.

This theory is no longer very popular. It is contradicted by many cases in which children (born with or without intersex anomalies) developed gender identity discordant with the sex assigned, as well as an extensive history of people who developed a socially acceptable gender identity despite growing up with ambiguous genitalia and without surgery. The most famous case of discordant gender id is recounted in (Colapinto 2000). The phenomenon of transsexuality is also relevant; these individuals develop discordant gender identity despite completely normal genital appearance. A summary of information about individuals who have done well despite growing up with ambiguous genitalia and no surgery is available at ISNA's FAQ.

Surprisingly, Money himself is the author of some of this information. His first encounter with an intersexed person is described on page 4 of the Prologue to his collection "Venuses Penuses" (sic).

At Harvard, I probably would have gone down the mainstream of clinical psychology of the time except for the coincidence of a case presentation in the Fall of 1949 by George Gardner MD for Social Relations Course 281A, Clincal Problems of Child Guidance, at the Judge Baker Guidance Center in Boston. The case was one of hermaphroditism in a child who had grown up always as a boy despite having been born with, instead of a penis, an organ the size and form of a clitoris. At puberty, he feminized in physique. It is now known in retrospect that his case was one of the androgen-insensitivity syndrome. Psychologically he was a boy and could not entertain the idea of reassignment as a girl. Even though not too much could be achieved by way of surgery and hormone treatment, he was permitted to continue living as a boy. He has since married and become a father by adoption, and has achieved professional recognition in the world of medicine.

Money's 1952 PhD dissertation contains discussion of numerous published cases for the period:

The findings are somewhat disconcerting, for one would not have been surprised had the paradox of hermaphroditism been a fertile source of psychosis and neurosis.. The evidence, however, shows that the incidence of the so-called functional psychoses in the most ambisexual of the hermaphrodites—those who could not help but be aware that they are sexually equivocal—was extraordinarily low.

There are also vingettes of people in (Young 1937) who seemed to be doing quite well without surgery, and who refused Young's offer of surgery.

Money, J., J. G. Hampson, et al. (1955). "Hermaphroditism: Recommendations Concerning Assignment of Sex, Change of Sex, and Psychologic Management." Bulletin of Johns Hopkins Hospital 97(4): 284-300.

Money, J., J. G. Hampson, et al. (1955). "An Examination of Some Basic Sexual Concepts: The Evidence of Human Hermaphroditism." Bulletin of the Johns Hopkins Hospital 97(4): 301-319.

Money, J., J. G. Hampson, et al. (1955). "Sexual incongruities and psychopathology: The evidence of human hermaphroditism." Bulletin of the Johns Hopkins Hospital 97(4): 43-57.

Colapinto, J. (2000). As Nature Made Him : The Boy Who Was Raised As a Girl. New York, Harper Collins.

Dreger, A. D. (1998). Hermaphrodites and the Medical Invention of Sex. Cambridge, Harvard University Press.

http://www.isna.org/faq/healthy

Money, John. 1952. Hermaphroditism: An Inquiry into the Nature of a Human Paradox. Doctoral Dissertation, Harvard University, Cambridge (444 pages). Can be ordered directly from Harvard University’s Widener Library for about $100.

Young, H. H. (1937). Genital Abnormalities, Hermaphroditism, and Related Adrenal Diseases. Baltimore, Williams and Wilkins.

Cherylchase 17:00, 5 May 2006 (UTC)

No quarrel with the history, and many of your papers are already cited in the history article. I'll add a couple more. One of Money's original arguments for operating to normalize genital appearance was to facilitate the ability of the parents to implant a firm gender identity by having no doubt themselves. I heard Money make this argument in the late 1970s, and we can make this more explicit in the history article, but I have not heard this specific argument made as a justification for infant surgery since then. No one would disagree that a genital appearance concordant with a gender assignment does not guarantee a gender identity concordant with gender assignment. But the problem with arguing by exceptions is that it only negates claims that "X always implies Y", and no doctors or psychologists argue that "normal genital appearance always produces normal psychosexual development". Medical management decisions are usually based on probabilities and perceived best choices rather than absolutes, and exceptions must be so numerous as to not seem unusual to negate the argument of surgical proponents that gender identity is more likely to agree with assignment if appearance and assignment are concordant-- and in fact this is a tough proposition to disprove.

Please note I am not trying to present a weak argument against surgery and certainly not to misrepresent reasons for opposition, but much arguing against surgery does exactly that-- misrepresents arguments in favor of it and argues against caricatured, obsolete, or inaccurate rationales. Help me describe the arguments for and against infant surgery as strongly and fairly as possible without misrepresenting either set of arguments. When I have argued against surgery with surgeons or other endocrinologists I have never done so by accusing them of wanting to operate because of "confused thinking" about goals, or because one of the original arguments for surgery was based on an out-of-fashion psychological theory. Arguing that uncorrected, abnormal genitalia does not preclude satisfactory sexual development may be true, but you could also argue against repairing a cleft lip because some people with unrepaired cleft lips manage to achieve satisfactory social development. Some much stronger arguments (if true) against repairing cleft lips in infancy would be that (1) a high proportion of people with repaired clefts cannot eat properly as adults and still need tube feeding, (2) a high proportion of adults with repaired clefts say they wish that they had not been repaired, (3) the complication rate for adult repair is much lower than when done in infancy, (4) the social outcome by objective criteria (likelihood of educational attainment, job achievement, marriage, life satisfaction measures) is worse for people with repaired clefts than unrepaired. Data to support assertions like those would be far more powerful arguments against cleft lip surgery than reminding people that when first performed in the 1940s some people thought "making it possible to smile normally" was essential to healthy social development and now we know there are exceptions. Do you see what a big gap there is between arguing against surgery based on outcome and arguing against it based on an out-of-fashion psychological rationale for it that no one under 50 even remembers? Many doctors think psychological theories come in and out of academic and political fashion more than than they are "proved or disproved", so they don't put much weight on arguments based on their validity anyway.

If you feel that the current description of the principal reason for opposing infant surgery to normalize appearance is misrepresented, how would you better state that concisely and accurately?

• Opponents of surgery for the purpose of normalizing appearance argue that surgery carries risks of harm and complications, and an abnormal genital appearance is less an impediment to healthy psychosexual development than has been thought by many psychologists and doctors.
• Opponents of surgery for the purpose of normalizing appearance to alleviate parental distress argue that instead of incurring the risks of surgery we should be trying to change parental and social values so that abnormal genitalia are not a source of distress.
• Opponents of surgery for the purpose of normalizing appearance to improve psychosexual maturation and adult function say that those who advocate surgery overvalue the role of a "closer-to-normal" appearance in satisfactory psychosexual development.

Are any of the above more accurate? alteripse 22:36, 5 May 2006 (UTC)

[edit] Money theory remained dominant until less than a decade ago

I don't think that Money's theory is "an out-of-fashion psychological rationale for it that no one under 50 even remembers". In (Kessler 1998), Suzanne Kessler reports on assumptions and attributions of meaning revealed in interviews she carried out with six doctors who worked with intersex children in New York. These were three men, three women, one clinical geneticist, two peds endos, one endo, one psychoendocrinologist (guess we know who that is), and one urologist. The represent four different medical centers, no two of them collaborate on research or work together on a team. They all had extensive clinical experience with various intersex syndromes, and some are internationally known researchers in the field of intersexuality. They were selected based on their prominence in the field, and in such a way as to cover four different centers. All were interviewed in the spring of 1985, in their offices.

All six specialists told Kessler that management of intersexed chases is based upon the theory of gender proposed by Money in 1955 and elaborated in 1972. From the transcribed interviews:

I think we [physicians] have been raised in the Money theory. (an endocrinologist)

We always approach the problem in a similar way and it's been dictated, to a large extent, by the work of John Money and Anke Erhardt because they are the only people who have published, at least in medical literature, any data, any guidelines. . . . And I don't know how effective it is. (another endo)

Kessler on the pervasiveness of the Money theory:

Contradictory data were not mentioned by any of the six physicians, and have not reduced these physicians' belief in the theory's validity. Although only one of the physicians interviewed has published with Money, they all essentially concur with his views and give the impression of a consensus that is rarely encountered in science. The one physician who raised some questions about Money's philosophy and the gender theory on which it is based has extensive experience with intersexuality in a nonindustrialized culture where the infant is managed differently with no apparent harm to gender development. Even though psychologists fiercely argue issues of gender identity and gender role development, doctors who treat intersexed infants seem untouched by these debates. There are still, in the late 1990s, few renegade voices within the medical establishment. Why Money has been so single handedly influential in promoting his ideas about gender is a question worthy of a separate substantial analysis.

I don't believe that the Money rationale for early genital surgery fell out of favor until after the David Reimer story hit Rolling Stone in 1997. The story was known earlier (Diamond was presenting it in Fall 1995, and ISNA published an account of Diamond's presentation).

I'm not ignoring your question about how best to represent the argument of opponents of surgery. First I would like to demonstrate that rationales for surgery have been guesses, not evidence-based, and that as each rationale has fallen out of fashion, a different rationale has taken its place, and not through a process involving scientific thinking.

Cherylchase 06:15, 6 May 2006 (UTC)

There is no question that John Money was more influential than anyone else in shaping intersex management since the late 1950s, even today. I was referring to your specific assertion that the original rationale for surgery to normalize appearance is the premise that the appearance must be normal in order for parents to "teach" or "implant" a firm gender identity in a child. I agree 95% with your last sentence--- my 5% reservation is that "evidence-based" is a graded quality rather than a binary one, and even Money based his theories and recommendations on observed case evidence described in the very papers you cite. You can claim his evidence was weak or that it was misinterpreted, but it was remarkably similar in quality to the strongest evidence that ISNA used to challenge the dominant approach a decade ago, which was basically, "look at all these unhappy people treated the old way; there must be a better approach." Right? alteripse 16:03, 6 May 2006 (UTC)

Actually, I don't see where Money said "look at all these unhappy people treated the old way." In fact, he published a large volume of material that showed people were doing quite well the old way. I think that a mystery remaining for historians to address is why Money, between 1952 and 1955, changed his mind, and began to write that intersexuality was simply incompatible with a life worth living. Just to be clear, I'm not interested in villainizing Money. I don't think that he is responsible for the history of intersex surgeries and secrecy. Rather, he provided a plausible rationale for something that people were already motivated to do. Without Money, there might have been different decisions made about sex assignment, and different stories told to parents and patients, but I doubt that there would have been less surgery and secrecy.

The contemporary argument against surgery is not as weak as Money's earlier rationale for surgery. A decision to perform a risky and irreversible intervention requires a higher level of evidence than the decision to practice conservative medicine. There's no demonstrated benefit of infant surgery. Outcome studies, though small and open to criticism about sample bias, and viewed with skepticism by leading surgeons ("wouldn't have happened if *I* had performed the surgery," or "my new technique is so much better than those older techniques") support the types of harm pointed out by intersex adults subjected to early surgeries. Cherylchase 16:30, 6 May 2006 (UTC)

There is no mystery about why he concluded gender identity is "taught" after a few years at Hopkins: they were seeing a parade of patients with the same chromosomes and diseases but some had been assigned one sex and some the other. They saw clearly that sex of assignment and rearing was a far stronger predictor of gender identity than sex of chromosomes, gonads, or hormones (at least for people with intersex conditions). That fundamental observation is still clearly true, and still underlies much of our thinking about human sexual development. It was hubristic to think that sex of rearing starting in the second year of life could offset completely concordant gonads, chromosomes, hormones, and original assignment.

And yes, the controversy over infant surgery is over weighing risks and benefits and outcomes, not imputed motives. As with other surgery for cosmetic purposes, not everyone agrees there is "no demonstrated benefit" to making a baby's genitalia look more normal, but it is clearly a "benefit" that is largely subjective and culturally influenced, and the objective risks need to be accurately ascertained and understood by all concerned. alteripse 17:15, 6 May 2006 (UTC)

Actually, the bit about cultural influence brings up the point about comparisons with Female Genital Cutting (I believe that is the current PC term). I realize that a lot of this article is dealing with birth defects, but the parts about surgical "reinforcement" (for the lack of a better term) of the sex of rearing should probably make some mention of this. Like with FGC, the "benefits" in those cases are cultural and social acceptance, as well as the cascade that derives from this. While I don't have any sources handy, I have seen this point raised by several people; I suspect Ms/Mrs Chase might know of a decent source we might quote on this. Zuiram 16:45, 31 March 2007 (UTC) (Not watchlisted)

I am not sure I understand your point. May I remind you that our preference for a normal upper lip instead of a cleft upper lip is "cultural" also? I don't think anyone should question that improved "cultural and social acceptance" has always been the principal reason that surgeons and parents have put infants through surgery to correct socially significant differences from body norms, and is typically the main reason adults undergo most surgery on their external sexual parts. alteripse 12:23, 1 April 2007 (UTC) OK, if you are asking for a reference that says surgical reconstruction of the external genitalia of an infant with ambiguity will "reinforce" the development of a gender identity concordant with sex of rearing, the most influential reference making that claim was Money's Man & Woman, Boy & Girl, where he quite explicitly discussed the importance for a secure gender identity of having a matching external appearance. Although it seems "common sense" that it is at least a partly or frequently true assertion, I am reluctant to include the claim in the article for at least five reasons: (1) it has not been proven that surgical reconstruction increases the likelihood of a gender identity concordant with sex of rearing; (2) transsexualism demonstrates that appearance is certainly neither necessary nor sufficient for gender identity to match sex of rearing; (3) most surgeons currently would distinguish reinforcement of sex of rearing from enhancing "cultural and social acceptance", and would put far more weight on the latter as a justification for surgery; (4) these days most authorities are skittish of saying anything that seems to echo Money, as that very book also contained his most unequivocal presentation of the John/Joan case; (5) putting this claim in the article seems likely to draw fire from those who consider any mention of Money short of demonizing him grounds for attack. Have I covered your question? alteripse 22:51, 1 April 2007 (UTC)

[edit] another missing issue

I feel one point is missing here. POV. People often ascribe a succesful outcome to genital intervention. What I feel is missing is that people often fail to realise that the decision to change one's gender when it is incongruent with what was assigned as a child, post, is a painful, and hard process. I took such steps after much thought, repeated suicide atempts, and internal debate. I would suggest that most people mistakenly assigned to an incongruent (in terms of nature) gender 'just don't want to go their'. It's a tough process. Whats the stat, something like around 25 percent of M-F transgender people have attempted suicide? This is such a confusing area and like life in general I don't know that their are any right answers. I can say this - a doctor prescribing sex altering procedures in infancy and childhood should be pretty bloody sure. The science around this area is not concise or complete, and genetics, like life are complex. I come from a Bretherin Family like John Money interestingly - from the same area of the world too, and I know something of the shame, secrecy and insecurity of people who have these conditions. I have felt from time to time that I would like to line John Money up in the sights of a gun -blaming him in part for 'ruining me'. It really bloody hurts to hear surgery advocates such as Warne in Australia stating that they are only now testing the theory of what happens if they leave people with unusual genitals alone - suggesting that this needs more research, which is odd considering this would be the natural state without intervention. Wouldn't it be nice if society was understanding in general? I find it bloody hard hearing about bretherin people describing intersex people as evil, along with gay and transgender people. And I have a number of family members, of bretherin blood who are intersex individuals also. Why does no one cut to the mustard in the articles and talk about how consanguanuity can be related to these conditions. Everyone steers clear of these issues, and 'won't go their' but I beleive this is a real issue that is relevant for many, and the cause of much historical discrimination, secrecy and shame. yes it's horrible, but life's not perfect. —The preceding unsigned comment was added by 125.239.46.152 (talk) 18:26, 21 April 2007 (UTC).

Thanks for your input based on experience. In general, from the standpoint of doctors and parents, a successful outcome is a grown-up child child who feels good about him/herself, has close connections (including sexual) with other people and is contributing to society, and is either unaware of a major fear for those things when he/she was born, or agrees that his/her parents and doctors did the best possible things they could to improve the attainability of those goals. Life being what it is, those goals are never guaranteed for any new infant. When the treatment done for those purposes actually reduces the likelihood of achieving them, or is perceived as doing so, it is doubly tragic for everyone involved. It is bad enough to have a serious birth defect that affects central things in one's life that we all hope for-- it is worse if one thinks well-intentioned people have made it worse.

As far as the consanguinity goes, there is a good reason it is not frequently mentioned. It actually plays a part in only a small fraction of this type of birth defect. In those societies in which consanguinity is considered something to be hidden, as you seem to feel is being done, very few parents of infants with these conditions are consanguineous. In the few societies in which autosomal recessive intersex conditions are more common (e.g., certain villages in the southern Dominican Republic, certain Bedouin populations, certain New Guinea tribes) because of higher rates of 3rd degree consanguinity, it is not considered abnormal or shameful. alteripse 20:19, 21 April 2007 (UTC)

As I understood things their are only very few countries that routinley test for consanguinuity in the instance to congenital abnormality(although perhaps I prefer the term anomoly;) - sorry - I also prefer refering to polymorphisms than mutations). Their have been a number of large studies into consanguinity - one big one in france and one with a utah population I beleive. Accidents in life do happen, and I recall an uncle of mine going out with someone who turned out to be his neice due to a very quiet adoption and name changes some years ago... As I recall the instance of reported congenital abnormality in 2nd and 3rd degree consanginuity is something like 4 per thousand, as opposed to the more natural 1 per thousand. Interestingly this is a similar number to reported congenital abnormalities presenting upon environmental exposure to high dioxin levels. When consanguanuity is closer than this mutations are very more common and can be very more severe. I would suggest to you that the cytochrome genes have a large number of very similar sequences, and also lie in close proximity to a large number of holiday junctions. This would probably explain why kidney conditions, and differences in genital formation are among the most common (if not the most common) congenital abnormalities. (Side note when does mutation become evolution? one would suggest that these areas are evolutionarily important for humans and mammals - steroidal enzyme pathways often show many possible routes to a similar outcome - redundancy is present) ... regardless. I would suggest that in the treatment of congenital abnormalities it would be responsible to test for consanguanuity - (it is a simple genetic test, and mathmatical equation). I would also suggest that this could help elucidate the motives of parents - in particular a mother - who may not want to be reminded of past pain by raising a child with 'weird bits'. Given such a scenario could she be trusted to decide upon the best course of treatment for her infant. Which I think raises a question of who's particular shame and embaressment is surgery protecting.

I am given to bluntness, and I would suggest if you want to 'bang out a child with a recessive polymorphism, bang your...." I think you get where I am going.

Consanguanuity I would think would be a bigger issue than you suspect. It is not routinley tested for in western countries. I came upon these thoughts after life experience. I also understand how horrible some of the implications can be. —The preceding unsigned comment was added by 125.239.30.151 (talk) 07:28, 22 April 2007 (UTC).

I don't mind bluntness, and I do "get where you are going" but have some real reservations about your point. I can remember one case of an infant with CAH where there was no father and indeed incest was rumored. But CAH occurs in more than 1 in 15000 infants and the vast majority are not products of incest. The last thing any of them need is the suggestion that incest is a common cause of intersex, because it simply isn't-- in fact I cannot think of a better way than that assertion to amplify the social shame and stigma all the way around! I also think you are confounding consanguinity and incest. Incest is a social category. Consanguinity is not a binary characteristic, but a matter of degree. You and I are consanguineous, maybe only a couple dozen generations back if we both have English ancestry. There are many small populations in which the degree of consanguinity is higher (such as our nearby Amish population, as well as Bedouins, Dominicans, Papuans, Anatolian Greeks etc), but there is no evidence that incest rates are higher. There is no simple test for consanguinity, anyway. One can only test two people for concordance for a variety of polymorphisms and haplotypes, which is time consuming and far more expensive than a couple of genealogical questions. So instead of laws defining the degree of relationship that constitutes incest, do you think we should require all prospective parents to have their polymorphisms and haplotypes checked, and forbid the marriage if they match too well? Helping parents deal with an intersex condition is tough enough without testing them to try to prove the child is not a product of incest! Finally, you can call it a birth defect, congenital abnormality, or congenital anomaly, it is the condition and not the name that determines how much trouble it causes. alteripse 16:07, 22 April 2007 (UTC)

Oh my! I have to concur with what alteripse is saying here. Consanguinity and incest are largely different terms and yes, there's no evidence to suggest that incest is a common cause of CAH; the link is tenuous to say the least - Alison^☺ 17:11, 22 April 2007 (UTC)

I agree, hopefully not that common. Still, their are articles about 17 alpha hydroxylase here, and this has only been reported about 30 times around the world. Basically I come here and i read what I read all over the internet and pubmed - the ISNA and surgery advocates battling it out.Generally over issues I can't see anyone comeing to any agreement on - The good thing about this is that I choose to beleive that they all want the best for people who have intersex conditions. The bad thing I see is that this debate seems to permiate all. I wonder how they could work togeather to impliment positive steps. I don't think it would be a terrible thing if people born with intersex conditions were routinley given a test to detect the level of consanguanuity among the parents - for their best interests. In some cases where incest occured, and the young girls ended up having intersex children - some with other issues - and these children ended up murdered - in effect to hide people shame and embarresment - I am suggesting it wouldn't be all that expensive or time consuming to check that their wern't deeper problems. Just because people in western countries havn't looked for a link doesn't mean that it is tenuous. Look at the stats. How many woman report rape or incest compared to how often it happens - add to this the difficulty they may have to give birth to a child that is the product of this! Please!

Whats it cost for a couple of genetic tests - about 2 dollars in materials - perhaps five minutes time for a technician, and a computer program to analyse results - another minute for a technician to confirm the results. Just small test. Routinley used in a number of countries. I guess I am a little more cynical than the two of you. consanguanuity is almost always an issue in autosomal recessive congenital abnormalities. You are right it is not always insipid, things happen quite by accident and coincidence all the time. Still. Given the scenario of two parents having a child with a recessive congenital abnormality, wouldn't some genetic councelling informing them of the chances of congenital abnormality be possitive? How can you be so sure that these insipid problems are never a problem if you don't look for them? i don't like the fact I have a brain tumor in my head, but I can't just tell myself it's not their and pretend it's never an issue. I wonder how many children have been murdered when a father or grandfather has realised 'what has happened in their family, and how it makes them feel'? As far as I am concerned one is two many.

The common 2nd or 3rd degree of relationship is fine sure, and certainly wouldn't raise my eyebrows. but. well, it seems that in areas that have been exposed to dioxins etc, increasing the risk of congenital abnormality to say 4 in 1000 as opposed to 1 in 1000 - well, those people living in that area need to know what the problems are, and make informed choices about having a family. —The preceding unsigned comment was added by 125.239.30.151 (talk) 11:21, 23 April 2007 (UTC).

Oh actually, and I forgot to mention - I am almost certain I was reading about a genetic test which predicts the degree of consanguanuity on just one individual - ie, in the case of an intersex child or infant, then the test would only need to be completed on the child. I forget my reference sorry, but I think forensic techniques would describe it.

It was roughly based on percentages of homozygous sequences - something like this - you are right, I don't think it was totally accurate, but maybe a sensitivity of something like 95% as opposed to 99.9(recurring)%....http://www.journals.uchicago.edu/cgi-bin/resolve?id=doi:10.1086/503875&erFrom=6608762136345214721Guest