Talk:Androgen insensitivity syndrome

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References and Scientific Data Needed[edit]

For such a long, detailed article, very few references are actually provided. This condition has been studied well for over a century, so a good many articles have actually been published. The fact that so few (about 4) are cited, and even then sparingly, leads me to believe that much of this article has either been lifted from other sites, or is simply opinion. The Intersex Community has a very active, albeit activist, movement within it. Since a very real possibility exists that at least some of the information could have been included in this article for political or social reasons, it should be carefully edited and reference citations made each time information is provided. To do otherwise would be to allow the possibility that misinformation could be disseminated about a condition that is already largely misunderstood. —Preceding unsigned comment added by 24.4.206.66 (talk) 16:17, 13 April 2009 (UTC)

POV issues[edit]

1. "and perhaps the unfairness of presenting a child in early adolescence with choices dodged as too difficult by parents and physicians 12 years earlier." (listed as a con for the non-surgical approach)

What about the unfairness of taking those choices away? I see no such ethical musings listed in favor of the non-surgical approach. And how is leaving a descision, difficult or otherwise, to the person you belive has the exclusive right to make it "dodging" it.

2."This most obvious birth defect, somewhat midway between male and female, nearly always leads to referral to a pediatric endocrinologist and a full genetic, anatomic, and hormonal evaluation.

I admit this may not be POV simply on the grounds that the language is so difficult to understand. Somewhere between male and female there exists a most obvious birth defect. What's defective? Is the article talking abour troublesome hypospadias, because thats not limited to Reifenstein syndrome. -Annonymous February 18 2006

Thank you for spelling out your criticisms. Note that I already integrated at least two of your suggested changes. Here are my responses to the above.

  1. Gender is in nearly all cases of normal or abnormal genitalia assigned by parents and doctors at birth. This is simply what is done for your basic baby whose genitalia are either normal or the more common types of abnormal. Most congenital anomalies of the genitalia are simply repaired in infancy. The potential disadvantages of this are clearly stated: some people want to change sex and this may result in everyone involved regretting that surgery in infancy was done or engaging in additional surgery, and many people complain of reduced sexual function. How can it be put more clearly? The delayed surgery choice may be especially appropriate for this middle degree of AIS. It is given more space than the traditional approach, and its putative advantages are mentioned but the potential drawbacks should be also. We dont have much experience with this option yet.
  2. "This most obvious birth defect, midway between..." refers to the most intermediate degrees of AIS (once referred to as Reifenstein syndrome). Among the problems produced by it: micropenis with poor response to testosterone treatment, reduced fertility, urinary problems, inability to engage as readily as desired in the most common types of sexual intercourse desired, parental uncertainty and distress over assignment, social stress, distressing experiences with medical care, etc. These problems are objective and described by the people with the condition, regardless of whether someone else thinks it should be perceived as a problem or not. Management decisions for the complete or nearly complete degrees and the mild degrees are easy in comparison to these. That is why the management options are described for each form separately. I thought it was clear that this section referred to the intermediate degrees, but I will look at the text again and make it even clearer.
  3. Finally, everyone's view on this is a "POV". It is the people who claim not to have one but want to censor the others from the list that are most annoying. Unlike some of the editors on this project, I do not have enough omniscience, prescience, limited imagination, or hubristic certainty to claim that I know which choice is definitely the best. I will clearly state my POV, which is based on substantial experience: there is no such thing as a universal "best" management for all infants and families, only a choice between which potential problems to reduce or accept. Finally, I am not opposed to newer choices and have even recommended them, but I am not naively optimistic that they will prove problem-free-- just different problems. Finally, may I suggest you make an account and help improve the more incomplete articles, of which there are many? It will help your understanding of what goes into this as well as my responses. alteripse 02:45, 20 February 2006 (UTC)


I still find 2 confusing, why not just explain like you did here?

1 is still POV the possible "unfairness" of "dodging" the decision is not contrasted againt the unfairness of taking that descision away. No finger wagging need be done in the direction of the parents and doctors to explain that making such choices may be difficult for an adolescent. It is not an objective fact that it is their descision to make, hence by passing it off to their child they should not be said to be "dodging" it because it is "too difficult", any more than I should go edit it to say that they are stealing it away. There are legitimate arguments to be made for leaving the decision to the patient that have nothing to do with laziness on the part of parents or doctors. Annonymous Febuary 20 12:55 PM

Sorry but in all human cultures, gender assignment and neonatal surgery are decisions entrusted to parents, usually with help of doctors or midwives. It is the nature of human beings and not something that needs to be symmetrically criticized. And the decision about surgery in adolescence is a difficult one to leave to a child-- whether you think so or not. Read again, this is not presented as a reason not to choose this course, only as "perhaps" a potential problem. And also contrary to your claim, I am not insulting, finger wagging, or imputing laziness to the adults who leave it to the child. alteripse 03:03, 21 February 2006 (UTC)


"It is the nature of human beings and not something that needs to be symmetrically criticized."

Why? Because you say so? And since when is so-called "human nature" above criticism? And who said anything about gender assignment? In any event thats not what we're talking about here.

"And the decision about surgery in adolescence is a difficult one to leave to a child-- whether you think so or not."

I would appreciate it if you would please actually read my posts before responding to them, thank you.

"And also contrary to your claim, I am not insulting, finger wagging, or imputing laziness to the adults who leave it to the child."

The article refers to leavin the descision to the child as "unfair" and accuses the parents and doctors of "dodging" it as "too difficult". That is insulting and finger wagging. The possibility that they might see the desision as simply not their's to make is not even mentioned.

Annonymous 10:38 February 21 2006

I will respond to what you write if you do me the same courtesy. The strongest argument that can be made for deferring the decision about surgery is not that we should allow all children to choose whether to have congenital birth defects repaired, nor that we should explicitly encourage all children in early adolescence to confirm their comfort with their sex of assignment and raising. The strongest argument is that as we have better understood the frequency of adult problems after traditional management, optimal management has become less clear, a more difficult decision, and perhaps if we share ownership of this difficult decision with the person most affected, a smaller number of adults will feel they were mismanaged. Some of us who deal with children of that age do not feel that it will be any easier a decision for them than for parents and doctors, and the sentence with its perhaps simply acknowledges that. And perhaps I may be wrong. Note it is not presented as a compelling argument against that course, just as a potential cost or problem. If you can't even understand this concern it reflects badly on your empathy or experience with early adolescents. If you want to censor even this mild reservation it suggests you have the kind of hubristic certainty about these conditions that made it so hard for some people to see or admit the problems with traditional management. alteripse 02:38, 22 February 2006 (UTC)

"Unfairness" is not just a different way of saying difficulty. Accusing someone of "dodging" a descision because it is "too difficult" is not just a different way of saying they "shared ownership of a difficult decision with the person most affected". If you mean that the descision is difficult, stressful, whatever, then put that. If you feel that it perhaps might be unfair, then put that, but as written it treats unfairness as a given outcome that surgery can perhaps avoid.

And please stop trying to tell me what I think.

Annonymous 3:46 22 February 2006

pubic hair or lack thereof[edit]

"Little or no pubic hair or other androgenic hair appears, though no teenage girl ever complains of this to her doctor." What, never? --redfox 15:47, 4 January 2006 (UTC)

The statement is not hyperbolic though if you want to be pedantic I am sure somewhere someone has complained about it, but I have certainly never had a girl with delayed puberty express distress over lack of pubic hair, or an American doctor mention attempting to induce it to grow, nor is doing so mentioned in any of the American or European medical texts on therapy of delayed puberty or hypopituitarism or androgen insensitivity. I do remember an article published by some Greek doctors in one of the European pediatric journals perhaps 20 years ago desccribing a way to induce more pubic hair in girls with hypopituitarism (who often have sparse hair) with testosterone cream, but I have never ever heard an American girl complain about it. So go ahead and change it to "it is nearly unheard of for a teenage girl to complain of this to her doctor" if you would like to cover the remote possibility that someone somewhere might have done so. alteripse 23:14, 4 January 2006 (UTC)


I was once the national leader of the Androgen Insensitivity Support Group. Alterprise, I appreciate the hard work you have done to make this article sensitive and accurate. However, I feel I must add that, as a women with Complete AIS, who has met at least 100 other women with AIS, many of us, especially those of us now in middle age, were deeply distressed over the lack of pubic hair. We were terrified of locker rooms and being "found out." It was and is our "stigmata." And I am also afraid that, at least for me, the tone of the comments about no one ever talking to her doctor about lack of pubic hair, seem flip to me and carry a sting.

In the privacy of the support group, and amongst ourselves, we talk about having felt freakish, and of being terrified what boyfriends and later, hopefully, lovers would think about our lack of pubic hair. In my case, I have AIS Grade 7 on the Quigley scale, which means I have absolutely no pubic hair and no axillary (underarm hair). It is clear when you are intimate with a woman with Complete AIS (CAIS) that this is not someone who is carefully shaving or waxing away pubic hair. Just in the same way that you could tell if a man had no facial hair and no need to shave, you can tell that a woman with AIS simply does not have pubic hair. For many of us, it triggered conversations with lovers that we were simply unable (because we had been lied to and didn't know our diagnosis) to have. I personally feared that anyone I might fall in love with would assume that I was kinky beyond all measure. Remember, I came of age in the 1970s when almost no one in America was removing pubic hair. In fact, in my early 30s, before I came to know of my diagnosis, I tricked my OB-GYN into prescribing Estratest (estrogen and testosterone) for what I untruthfully said was a libido problem. I was trying to grow pubic hair.

You state that no one discusses this with her physician. I submit that, at least for those of us who are now of middle age, it was so shameful that it was something that could not be spoken. There were many of us who were so scared by the shame and fear of having "something" that no one would talk to us about, that we never mentioned anything to anyone--not our parents, not our doctors, not our girfriends and certainly not the man in our life. I was a psychologically healthy 16 year old until I went through being made the center of a medical circus. I then fell into a series of debilitating depression, self-injury and suicide attempts. It has been the hardest struggle of my life to recover from this diagnosis and the cone of secrecy that fell around me. We didn't talk about pubic hair because we didn't talk about anything and no one talked to us--not even our parents and our doctors--the people who were supposed to be caring for us. I compare what happened to us to the equivalent of being medically raped and then forced to be silent about it. That may sound harsh and it may be hard to believe that I am no longer harboring great amounts of anger, but I simply can find no other words to express how I feel about the silence that was imposed on me. I know that everyone around me was trying to do what they felt to be the best for me, but they were simply wrong in their assumption that if I didn't know my diagnosis, I would just stop wondering about it and "get on" with my life. In fact, the silence had the opposite effect.

As an example of what we didn't talk about: I went through almost two years of unsuccessful attempts to have intercourse which was impossible due to severe, in my case, vaginal hypoplasia. I never had the courage to tell anyone and the difficulty eventually destroyed the relationship between me and my boyfriend. (I have gone on to a successful sex life, marriage and motherhood through adoption. I have a good life and feel fully "over" AIS.)

I am no longer active in the support group, I feel like my issues around AIS are resolved. I will probably return again when my young nieces who have AIS are working through their own emotions and need support. While active in the group, I made it a point to work with the young teenage girls who were just learning of their diagnosis. It seems to me that the lack of pubic hair may be less of a problem for these younger women than it was for us. After all, it is now fashionable to be hairless.

I propose that no one, not our parents, not even the most caring of physicians, has any idea of the torment that is going on in the mind of a newly-diagnosed woman with AIS. That truth only comes out in support group meetings when it is only us AIS gals and in completley trustworthy relationships with a truly skilled therapist.

Oddly enough, I have never heard one of us complain of lack of axillary hair, but it doesn't carry the same emotional context of sexual maturity that breast development, menstruation and pubic hair have.

If I hadn't heard the same stories over and over again from so many women with AIS, I would say that this is all POV, but there must be some veracity and authenticity granted to those of us who have lived the diagnosis.

Respectfully, Espanglish (I would normally use my real name as it is already all over the Internet connected with AIS, but now I have young nieces with AIS who don't need to have their privacy violated by my posting my name in connection with this sensitive and difficult issue.)

Thank you for educating us. I am removing the sentence, which you accurately described as flip. alteripse 12:10, 6 May 2006 (UTC)

celebrity rumors[edit]

Mick 19:27 12 Jun 2003 (UTC)

Some people have theorized that Joan of Arc had anorexia nervosa. You will never get enough evidencfe to proove an AIS diagnosis for her, noDNA, no anatomy.Pustelnik 10:46, 9 July 2007 (UTC)


Since Jamie Lee Curtis and her father have at least three times, that I know of, denied that Jamie has this condition, we should really add some sort of proof other than rumors. I'm afraid that leaving this statement is not only potentially libelous, but aslo very inconsiderate. Also there is so much conjecture surrounding Joan of Arc, it really doesn't add anything to the understanding of the condition to put this in without proof.
What FACTS do we have?
Before we add these again, maybe we could find actual evidence and put it on the individual bio pages, then add it here as well, sound good? -Paige 19:29 12 Jun 2003 (UTC)


I'll have to find the dates, but I know that on The Veiw and a news interview, she denied it, and her father denied it during a call-in show. Can we please make sure BEFORE we write these things? I just want to be fair to these people. Even if Jamie has AIS, if she's not open about it, it's not our business to out her, you know? Paige 19:38 12 Jun 2003 (UTC)

I was told by my genetics professor that she had this and was, in fact "out" about it. So, inconclusive at this point, I'll leave it off. Never meant to be unfair to her. :oP Mick 19:41 12 Jun 2003 (UTC)

I appreciate that, Mick. And of course I know you meant well, 100%. You were only trying to add new info to the 'Pedia, and if we knew for sure, I think it would be VERY important to show an example of such a person. (It's so weird that no one famous is really out with this condition, you know?) I'll look again to see if I can find a famous name for this article, okay? Let us know if you find anything else on her, too. Thanks! Paige 20:02 12 Jun 2003 (UTC)

AIS, osteporosis and psychological issues[edit]

I would like to begin to work on a section about AIS and osteoporosis. While the issue is certainly not settled, research by Robert Marcus, Charmina Quigley, and quit a few other researcbers are clearly pointing the way toward the belief that reduced bone density is a feature of AIS, not just a result of AIS women defaulting on their HRT. I have multiple sources to support this.

Although there are far fewer studies about AIS and psychological outcome, there are a couple of very interesting studies out of England and in cooperation with both the UK and US AIS support groups that talk of the psychological difficulties experienced by women with AIS.

There is also some interesting work coming out of Harvard and the Boston Eye and Ear Institute about AIs and meibomian gland (eye) disfunction, but since the consequenes of this medical minor inconvenience, I don't think it is worth the effort of developing a section on this.

If I can support these sections with sources, is anyone going to blow a gasket? As a professional writer, and a woman with AIS, I can certainly take criticism and I know that I may not be the most unbiased of writers on this subject, but I will take great care to be as objective as I can be and I will depend on the community to point out where I fall from this standard. OK?

Espanglish

By all means add something about both topics. Would 2-5 sentences on each topic be proportional to the other specific problems discussed in the article? Can you give us a couple of specific references for each? alteripse 02:46, 7 May 2006 (UTC)

Testicular feminisation[edit]

Originally this was the name for AIS and it is still sometimes used. What people think of making a redirect page Testicular feminisation and ading the words "originally known as .. . . ." to the first line of this article?

Yes it should be a redirect, fixed now (there already was one for Testicular feminization, with a z instead of s). --WS 14:45, 3 September 2006 (UTC)

Mild Androgen Resistance[edit]

I find the information you present to be accurate but you fail to explore:

1.) novel and investigational therapeutics for MAIS, including but not limited to, high-dose androgen therapy in effort to increase the level of testosterone to twice the upper limit of normal to overcome resistance at the cellular level in cases of only minimal signalling problems.

I was surprised you did not talk about receptor negative AR-gene defects which are the most deleterious because in these cases, no AR receptors are present, resulting in CAIS. Receptor positive problems indicate receptors are present, but there are binding problems. Within the realm of receptor positive binding problems, there can be difficulties with androgen binding, or difficulties with DNA binding.6 The AR can exhibit reduced affinity for ligands, normal affinity with reduced capacity, or thermolability problems (reduced binding capacity at temperatures above 37 degrees), enhanced ligand dissociation, or modified ligand specificity, the causes of which can include frameshift mutations, deletions, missense and nonsense mutations, expansion of a CAG repeat, and mutations that interfere with splicing.6 For instance, one partial resistance mutation causes a replacement of a glutamine with a lysine residue.1 In partial resistance, defects may stem from point mutations in the steroid-binding domains or DNA-binding domain.

2.) the persistence to essentially categorize MAIS with CAIS by association in many parts of this article. MAIS deserves its own article, and many urologists would strongly disagree with the notion that MAIS (which is routinely seen as "infertile" cases) is the same as woman with CAIS. For a new reading public, there need to be more clear boundaries to indicate these are very different disorders that only share a slightly similar origin, yet as was seen from what I just wrote, the molecular biology of AIS is not simply about androgen resistance...it's highly nuanced and complex. user:Freethyroxine83

General reply. Thanks for the comments. 1. Comments about a specific article content are best put on the talk page of the article where all editors interested in the article can see them. For most articles there is no single author, but for many (including this), a single author did most of the work and may be quickest to respond to suggested changes. 2. Please sign comments on talk pages. I added your signature above-- you can do so more easily by typing four tildes and it will automatically convert that into your signature with a time/date stamp. 3. For the articles that are relatively comprehensive and polished, suggest significant content changes on the talk pages first, especially if it is a fact change from the text. If you make lots of changes in many parts of the text, it becomes harder for another editor to accept some and negotiate others and you may find the whole set of changes reverted pending discussion.

Specific replies about MAIS. 1. I have no disagreement with the specific content suggestions above. When I rewrote this article it was a multiply flawed article about testicular feminization (which you can see in the archive), and I tried to make the spectrum of forms of AIS clear to the reader. Most of the readers of this article have been interested only in the more severe forms, which are covered more comprehensively. If you think that MAIS is insufficiently emphasized, it is a matter of opinion, but suggest some specific changes-- as you probably noticed, I disagreed with the phrasing of a couple of the first comments you offered. 2. Your elaborations about the spectrum of AR abnormalities can certainly be put in the appropriate pathophysiology section. Bear in mind the article is already a large one and some of the medical articles have been criticized as too detailed or less accessible to a general reader. 3. I am not sure about the relative frequencies. At least two of my sources, several years old, suggested that the more severe forms were more common than MAIS, but clearly they are far more likely to be recognized. Can you cite a more recent population survey showing a frequency for MAIS that is not simply a non-pathologic polymorphism frequency (which is what I assume is the challenge to the compiling of such data)? 4. You can certainly write a new article on mild androgen insensitivity syndrome. All you have to do is click on the red link and type away.

A final general note. The medical and biological articles of wikipedia are very uneven. Contributing editors with expertise are welcome. However, editors willing to write new material or fix the worst articles are far more needed than those who simply feel the need to "tweak" the best articles. Please contribute. alteripse 11:12, 19 September 2006 (UTC)

"birth defect" and other recent changes[edit]

Of the recent anonymous changes, some are justifiable ,and some not. Please make an account and discuss. To begin with, what aspect of the definition of birth defect is not completely met by intermediate AIS? alteripse 23:17, 13 December 2006 (UTC)


"Birth defect" is a highly value laden label. Many intersexed persons resent being labelled as defective simply because their anatomy does not correspond to traditional definitions of sexual "normalcy". It is suggested that these labels speak more to social-cultural prejudices than to medical realities. Insofar as the "defective" nature of physical sexual variation has now come into question, it is time that we take up a more neutral and open language, as the debate continues. Thus I propose that "anatomical variation" is more appropriate than "birth defect". One can still argue as to whether the "variation" is harmful or not. 72.1.195.4 22:22, 15 December 2006 (UTC)

And by all your arguments you would call a cleft lip or absence of the ovaries examples of "anatomic variation"? A birth defect is a birth defect, neither more nor less. The term is immediately understandable and perfectly appropriate. "Anatomic variation is euphemistic obfuscation". More importantly I emphatically reject the idea that to acknowledge that an unwanted difference present at birth is an unwanted difference present at birth is to devalue or insult the person who has it. Repeat until you understand: People are not diseases and defects. Repeat until you understand: Having diseases and defects is an inevitable part of being a human being; calling it something different doesn't make it not a problem. For extra credit, review the Aesop's fable of the fox who lost his tail. alteripse 18:53, 18 January 2007 (UTC)

Cultural References[edit]

While there are few references in the media about AIS, I recall an episode of House where a patient had AIS. Also, the debunked idea of Jamie Lee Curtis having it could also be mentioned. —The preceding unsigned comment was added by Eedo Bee (talkcontribs) 14:54, 18 January 2007 (UTC).

I do not think it worth mentioning that a television episode featured a garbled 10- second description of a disease; sorry if you disagree. The celebrity rumor is a more important issue specifically related to AIS. The celebrity rumor factor is dealt with in the article, but I think we need to refrain from specific names unless there has been public confirmation. alteripse 18:41, 18 January 2007 (UTC)
That was "Skin Deep", wasn't it? It was referred to as male pseudohermaphroditism there, though. --WPholic(user)(talk) 11:52, 11 August 2008 (UTC)

Location of urethra in CAIS and AIS individuals.[edit]

I have a question about the location of the urethra (urine duct) in individuals with CAIS and other forms of AIS.

In CAIS cases, the article makes clear that the individual has no functioning vagina (birth canal), and nothing which even remotely resembles a uterine cervix or uterine corpus (any part of a womb). It also clearly mentions that instead of ovaries, said individual typically has a pair of undescended testes; and that his phallus resembles a normal clitoris.

My question is about said individual's capacity to urinate. Does excretion of urine occur through a duct which is completely separate from the phallus (as it would in a normal 46XX girl), or does it instead occur through a duct which permeates said phallus? Also, if the latter is the case, does it allow for urination while standing?

--I couldn't help but notice how silent the article is on this topic. Pine 05:25, 15 April 2007 (UTC)

I thought the article was pretty clear that anatomy for CAIS was that of a female except absence of uterus and ovaries (which are not part of the urinary system). There is no penis, but a clitoris. The urethral opening is on the perineum anterior to the vagina as it normally is in females. The person is in all respects but the internal reproductive system a normal woman, and you clearly have not yet grasped the nature of this condition if you think of such a person as "he" just because of the chromosomes and gonads. Do you know what your chromosomes are? Would a surprise make you other than you are? Read it again and tell me if you can think of a way we can make that clearer. alteripse 12:04, 15 April 2007 (UTC)

--Thank you for the prompt response!.

I just wanted to make certain that the urethral opening and phallus (hereinafter, "clitoris") were distinct, in CAIS individuals. Since the clitoris is not permeated or impregnated by the urethra, I'll safely assume that urination occurs in an individual with CAIS by either sitting or squatting. The only change I'd suggest making to the article, is one which clarifies the urinary system's appearance; as well as that of the reproductive system.

P.S. In order to avoid having to say something verbose like "the individual's" and "said individual's", I thought it prudent to use the possessive pronoun "his".

In the English language, it is more-or-less settled that masculine pronouns may be used as a default where it is not entirely certain that either feminine or neuter pronouns apply.  :) Pine 23:53, 16 April 2007 (UTC)

Except that everyone with CAIS is a woman. There is no such thing as a "he" with CAIS. alteripse 00:18, 17 April 2007 (UTC)
First of all, I cannot express how much ignorance you have for the very concept of gender, let alone medical definition of the concept. GENOTYPICALLY, these people are either male or hermaphrodites. PHENOTYPICALLY, most of these people will NEVER be FULLY female under THAT consideration, lacking the internal organs, and thus, to call ALL of them female despite NEVER classifying as female GENOTYPICALLY OR PHENOTYPICALLY is only the HIGHEST level of ignorance. Secondly, there IS such a thing as gender preference, and even if you, with your sexist view of the world, choose to view them as female, it is ultimately up to THE PERSON IN QUESTION whether they are male or female. Thirdly, to address the question above about urination, females are just as perfectly capable of peeing standing up as males, the problem is that it is a societal requirement for males to learn to pee standing up, and thus they learn to do so as children. Most women do not learn it is even possible until the learning capacity for many things has diminished significantly, and as thus it is harder for females to do so by habit. 96.227.89.33 (talk) 06:53, 26 February 2011 (UTC)

Forgive for further modifying the paragraph, but I want to keep the intro as brief and clear as possible. Normal is normal and to start listing certain parts as normal implies others are not. alteripse 07:10, 17 April 2007 (UTC)

AIS ---Possible genetic homology with Drosophila Fly's "ken gene" ?[edit]

In the genome of the Drosophila Fly, there is one particular gene which (when deleted) produces offspring with no external reproductive organs. Entomological geneticists have dubbed it the "Ken gene", (after "Ken Carson" of Barbie/Hot Wheels fame). Could the X-linked gene in people which causes androgen insensitivity in gestation be a relic, or at least a derivative, of this gene?

I'm perfectly aware that homology between a vertebrate and an invertebrate species is (to say the absolute least) difficult to establish. Yet, given that there are only an estimated 25,000 genes in the human genome; could this potentially be a starting point to determining how the minute differences in our genetics cause our boldy proteins to react in such a manner that distinguishes us from other living creatures?

So far, the proteomics field is wide open to speculation, and this could possibly lead somewhere. Pine 04:38, 17 April 2007 (UTC)

Homology has a precise meaning when applied to genes and only a defect of the androgen receptor would be a homologous defect. The defect you mention is another example of a disorder of sexual development but is not homologous. alteripse 07:13, 17 April 2007 (UTC)

GendersInX - A Community Support for People of a Genetic anomaly[edit]

Hello;

The purpose of this site is to positively reassure those who have a genetic anomaly to their make up and that they are not alone. It includes Klinefelter's Syndrome, Turner's Syndrome, Androgen Insensitivity Syndrome and Congenital Adrenal Hyperplasia including all variants thereof. Parent's of children who have any of these are most welcome to encourage each other and exchange notes.

My name is André and I am Klinefelter XXY Mosaic. I have been diagnosed in 1985 at the tender age of 22. I am the creator and administrator of GendersInX. I strive to ensure that all aspects of Klinefelter's, Turner's, Androgen Insensitivity Syndromes and Congenital Adrenal Hyperplasia are addressed and positively reinforced. This site is not meant to be competing with any other site rather it's meant as another option.

The name GendersInX stems from what we have in common, the X Chromosome. Through this X Chromosome, we see so many different variants like some of the X chromosomes have been dropped, gained and stayed the same but definitely does not fit the norm in our society as we now know it. I believe this will change.

This could be a "feel good" site but it's more realistic than that. I know that there are many things that can get us down in life never mind what medications and additional issues we have to deal with. Once in a while, it's good to be reassured that we are doing the right thing, that going on is a good choice, that the feeling of emptiness and wanting is shared and that we are in it together. Friends are forged in terrible times, I'm pretty sure you will find one here. It is important that we can go somewhere and not be judged in what we think and how we cope.

I have provided many forums for the individual conditions and variants thereof. It is also important to address those who feel that they do not belong to a specific gender as a direct or indirect result of these syndromes or conditions, so forums such as gender dysphoria and intersex are provided. Also included are forums for those who need to express thier beliefs as a part of coping with a syndrome. The format in each of those forums are the same with each focused on that particular syndrome or variant thereof. Each of these forums are moderated by a person of that syndrome or condition. You certainly can refer to them or me, as you wish.

Life isn't made from peaches and cream or is flowery by any means. It is, however, nice to relax somewhere where judgment is left on the outside. I hope I can provide that for you and with you.

Sincerely yours,

André GendersInX@Gmail.com www.GendersInX.org (April 25, 2007) —The preceding unsigned comment was added by GendersInX (talkcontribs) 15:50, 25 April 2007 (UTC).

Andre, you do realize that people with AIS do not have a missing or extra X chromosome, dont't you? alteripse 16:02, 25 April 2007 (UTC)

Yes, I realise that and I apologise. GendersInX has gone through some changes in the recent past. One of which is the wording was changed when more has come to light. I would encourage a person with any form of AIS to help dispell some of the myths surrounding all forms of AIS. I would rather learn from the person than to read all the medical jounals.

Double Carrier?[edit]

Forgive my technical medical ignorance, but nothing in the article actually discusses a point about which I wondered and I was hoping one of the learned editors who have worked on the article could clarify the situation. It regards a 46, XX female who has inherited this syndrome from both parents. (Which would logically mean a mother who was a carrier and a fertile father, who thus would have type 5 or 6 of the listed variations of the syndrome.) Is there any current medical information regarding such a hypothetical female? Would she just be a double carrier, with a 100% chance of her children being female carriers or males with some form of the syndrome, or would there actually be some sort of medical issue for her due to the reinforcing of the recessive mutation? Again, I apologize if the answer to this is obvious to anyone with adequate medical training, but I am just a layman who reached this article by a habit of following any links which stimulate my intellectual curiosity and promise to educate me on a subject with which I am unfamiliar. (I am firmly of the opinion that contented ignorance causes many of society's ills and welcome any chance to reduce my own lack of knowledge and understanding.)

Cadrac 00:58, 20 May 2007 (UTC)

As for many questions about human biology, there is a simple answer and a complicated answer. The simple answer is that no XX women who carry 2 defective copies of the AR gene have been described because there have been almost no fertile XY men with even the milder forms of AIS. The complicated answer is that if a mutation affected an XY man so mildly that he was a man able to marry and have sex with a woman and was fertile, even an offspring XX daughter who carried one severe mutation and the really mild one would probably have no clinical effects other than maybe slightly less androgenic hair. alteripse 01:42, 20 May 2007 (UTC)

CAIS urban legends[edit]

This is a patient answer to Asarelah, who removed a section with a gratuitously insulting edit summary, and who has clearly not read the previous discussion on this topic above. I am glad you are so much obviously a better writer than I am and I would be happy to have you point to a well-written article you have contributed. However, until we have verifiable confirmation of a specific celebrity, it is not "better writing" to promulgate a false rumor about a living person even if you link it to a debunking site. The previous content had exactly the same message, that all rumors to date about specific celebrities (and there were others before JLC and will no doubt be others in the future) are unverified and tediously similar. For a reader who has only heard about this year's candidate and intends to add something "hot" here, there was nothing wrong with a general description of this phenomenon (which has been going on since the 1960s, and is perhaps the most interesting "AIS in general culture" aspect of the topic). I am open to a suggestion for improved wording, but nothing you added improved the content, you violated policy, and you removed the broader perspective. And thanks for your polite editing style; it's a pleasure to meet you. alteripse 00:41, 30 May 2007 (UTC)

I called it poorly written because I honestly felt that it really was poorly written, not because I want to insult you. I did not mean to offend, only to improve the article. I am sorry to have angered you, but I really think that this passage is not written in anything remotely resembling the formal tone of an encyclopedia article.

Inevitably, when CAIS is discussed or taught, someone will mention that they have heard from a reliable source that insert name of voluptuous female movie star or celebrity has AIS, as if offering some titillating scandal or memorable illustration. Lack of corroborative evidence never stops a good rumor. I am merely attempting to improve this article by removing what I thought was bad prose and adding a cited link, and JLC is the only celebrity that I can find a with link to prove that this rumor exists about her. Asarelah 00:54, 30 May 2007 (UTC)

testicular feminization/AIS vs. androgen resistance[edit]

The introductory paragraph seems to lump AIS together with androgen resistance syndrome. These were taught as separate topics in my medical school, and the article here later seems to differentiate between the two in terms of partial and complete. I think it might be useful to un-couple these two things in the introduction, since AIS is, as the name states, insensitivity, and massive doses of testosterone (which are sometimes used to "treat" androgen resistance) would have no effect. As I understand it, androgen resistance is more of a partial problem and can be treated. rhetoric 20:02, 3 November 2007 (UTC)

This is just a matter of speach/terminology. Androgen resistance syndrome is the exact same thing as AIS, it just adresses the problems from another POV (resistance as pre-receptor problem vs insensitivity as receptor or even post-receptor problem). Mild forms of AIS, also calles partial AIS (some or more AR-receptor functioning; no relationship to specific receptor mutations) or even Mild-AIS have the same etiology. Treatment in these patients can have devastating effects if receptor functioning is impaired; peripheral conversion of testosterone into estrogens (via aromatase) can lead to (more) gynaecomastia and feminine body development. If treatment is given, I suppose it's for infertility-purposes (as Klinefelter patients in andrology follow up). Chbse 10:02, 15 November 2007 (UTC)

Conditions not listed (while still being AIS).[edit]

I read the page here (the article), and AISSG's page describing various conditions within AIS (they use a different scale) and could not understand where I would fit within the scale, myself.

It seems there is little room, in both medical litterature and support groups, for (non-ambiguous) male-assigned AIS-affected individuals who may or not identify with their assigned sex.

My contention isn't with this, as there is no way I could fault a website that wants itself encyclopedic for not providing support to a subset of individuals. It was just to highlight how this may be overlooked often on the few places that cater to the entire AIS group (or purport to doing so).

My contention really is about how Reifenstein syndrome (the no 3 on the article) and Infertile male syndrome/Undervirilized fertile male syndrome (no 4 and 5 of the article) may leave holes - most notably, an infertile (thus not 5) and undervirilized male (thus not 4), who was born with non-ambiguous genitalia (thus not 3).

AISSG UK, on their support site, contend to address it on their scale as grade 1 or 2, though little information on either of those. Medical texts also have little information on those subsets of PAIS (or MAIS) or very-slanted information (towards male-identifying individuals, not unlike XXY-related information).

This is indeed a personal issue as some may have guessed...I am part of the mentioned subset, undervirilized, infertile, non-ambiguous genitalia, male-assigned at birth and non-male identifying (the gap needs not be only for female-identifying individuals). However I know not to be alone in this category and feel there is a 'gap' in the article by not mentioning this subset.

I am not attacking any of the previous contributors to the article in this, as the other categories are fine as they are, I just feel this one is missing. I would be hard-pressed to find a 'name' for my condition, besides Partial AIS, because there appears to be none, but I do not want to be accused of appropriating another condition (namely no 2 on the article), and would also like more information myself so as to provide my doctors with valuable information in order to treat me (that is not so vague).

Some information would be that it can (and does often) evade doctor's attention, especially without a known family history of it...for all/most their life, while being visible enough (visibly reduced male puberty, possibly breast growth and infertility - I abhor the term gynecomastia as it is value-laden). If neither breast growth occur, nor infertility verified, then chances are it will not be investigated, and even educated claims (such as mine here) will be dismissed as chance occurance rather than taken seriously.

I am more than willing to discuss this, and maybe even contribute to expanding this article to include or help include this section (by way of researching said topic), however this is not something I could do alone, I also have little experience of Wikipedia editing. Sara Zeal 06:15, 1 December 2007 (UTC)

I've looked closely to the article subsets you mention where you found some possible holes in subset gradations. I know what you mean if you say "holes", but I think we can add a few paragraphs that could clear up any incompletions. To start, "undervirilized" and "non-ambiguous" don't happily coincide in medical terminology, because of contradiction. Ambiguity is a result of (severe) hypovirilization obviously. Used medical terminology in patient research/patient medical records is something that needs attention; some physicians call an isolated micropenis (arbitrary measured: certainly not always micro to begin with) a form of ambiguous genitalia or genital ambiguity. Therefore, not knowing your full medical history (and not in need of; concerning privacy and respect for each other), I would think you do fit in the "4. Infertility male syndrome" because it does not specify absence or presence of any form of undervirilization.

Articles always need input and contribution, so please help out.Chbse 09:33, 2 December 2007 (UTC)


COMMENT:

Whilst excellent for the reader who wants to know a lot about AIS, this article is extremely long and hard to digest for one of its main audiences - the busy physician or medical student. Perhaps we could add an introduction where items are covered more pithily? Thanks. —Preceding unsigned comment added by 78.150.41.238 (talk) 11:49, 20 May 2008 (UTC)

I agree (I've agreed even before you commented :-)). The article has never been easy to read. Sadly, there's never been a real structure. Much info needs to be linked/merged to the intersexuality article. —Preceding unsigned comment added by Chbse (talkcontribs) 15:13, 20 May 2008 (UTC)
I agree as well, as a person with NO medical knowledge who is doing personal research, this page was very confusing. Kairnaola 17:32, 23 October 2008 (UTC)

Vandalism sucks![edit]

Frankly I'm getting tired of all the vandalism taking place on all the intersex-related pages. Can't we do anything more then revert changes? Serious global ban of the ip for the whole of wikipedia? Chbse 07:24, 12 August 2008 (UTC)

Gender implications in X-linked recessive inheritance image[edit]

I'm wondering if we could change the "X-linked recessive inheritance" image to remove the "son" and "daughter" qualifiers. I'll pose a situation: You find out your daughter has AIS and you google it. You get to the Wikipedia article and the child you see as your daughter is being referred to as your son. I'm not exactly sure how having those qualifiers helps to better understand the condition, in my opinion, they only obfuscate the condition further by adding the confusion you get when you try to define what makes males male, and females female. This person is your daughter regardless of her genetic makeup. Perhaps some will disagree? Jgilgen (talk) 19:22, 13 August 2008 (UTC)

I really agree with this.. Those qualifiers Do not help to better understand the condition, especially in the Case of CAIS where the child has been raised female, and her Gender Identity is also female. I may have CAIS, and that image really really confuse me when I saw it. -Kairnaola10/23/08 1:30pmEST
Agreed completely. The image (File:XlinkRecessive.jpg) is the same as in X-linked recessive, and is appropriate for most non-intersex X-linked recessive conditions, but definitely not in this case. It does not really add any information not present in the text, so I will remove it. --David-Sarah Hopwood (talk) 19:57, 9 April 2009 (UTC)
I've decided to add back a modified version, with all children labelled as "child" rather than "son" or "daughter", and a female image for the affected child. (I'm aware that most people with AIS identify entirely as female, but there might be some exceptions who identify as bigender, androgyne, intersex, etc., given that the article covers all forms of AIS rather than just CAIS. Sorry in advance if this offends anyone. Of course, the images are still rather gender-stereotyped, but I was too lazy to redraw the whole thing...) --David-Sarah Hopwood (talk) 20:52, 9 April 2009 (UTC)
If you actually understand the article you will realize there are as many males as females with various forms of AIS (not CAIS). The image need not return-- it really is misleading. alteripse (talk) 00:38, 10 April 2009 (UTC)

AIS and Sexual Orientation[edit]

Dare I ask if it is possible that in some of the cases of AIS male-male sexual orientation could be the result? Why or why not?

173.73.122.89 (talk) 11:43, 6 May 2009 (UTC)

Sexual preference is not only the result of androgen (sensitivity). Social interactions/environment and some genetics are also factors of resulting sexual preference. Besides: in AIS (as well as other intersexual disorders/"differences") it is still relatively unknown what predicts the persons gender/physical appearance. So I think that AIS can be the cause of homosexual orientation in some cases, but it cannot be determined what caused it: AIS or normal development (I believe homosexuality is normal).Chbse 12:01, 9 May 2009 (UTC) —Preceding unsigned comment added by Chbse (talkcontribs)
Since AIS in all its forms includes people within the entire F to M spectrum of external anatomy and (presumably) gender identity, of course some are likely to be attracted to males. If you are asking whether those who identify as males could be attracted to males, it seems probable that there are such people unless you posit that AIS completely prevents whatever leads to male homosexuality. If you meant to ask the question in regard to CAIS, then the answer is no, since they are all females. alteripse (talk) 11:40, 11 May 2009 (UTC)

Gonadectomy on CAIS women[edit]

I wonder how comes that almost all CAIS women undergo gonadectomy? There are cases when they can't decide, ok (actually not ok, all of them should get the chance to make the decision, but it's not relevant to the question), but when one has the chance to tell the doctor to leave her alone, how could one still agrees?

I mean normal people value their gonads a lot, and if a doctor would tell a man that "Sir, your testicles have a 50% chance to develop cancer, I recommand you to have them removed!" than most man would say something like this: "Well, I still have 50% chance to NOT develop cancer, so don't dare to touch my balls as long as they are healthy, you *#@#*# (place random curse here)!" As a man I can't be sure, but I presume normal women are attached to their ovaries just as much.

So how can the doctors persuade a CAIS girl to let herself castrated?

One Answer: First, may I point out, women with CAIS, do value their gonads. Also, "Normal men and women's" gonads produce sperm and eggs, so they're attatched, because they know that one day, they can have kids. Women with CAIS can't get pregnant(obviously). The only thing they(theire gonads) do, are produce testosterone, that their bodies turn into estrogen. And if you have a good endocrinologist, they'll tell you to keep in your testies as long as you can, or atleast untill your done with puberty. And in many cases, women have a higher risk to produce testicular cancer, than "normal men". There are SEVERAl cases, where cysts produce in the testies, and they grow, and hurt, ad the doctors don't know if they're cancerus(there's a HUGE chance), so it's the best to get them removed. "Normal" should NEVER be used. Ya know why? Probably not, becasue most people like yourself, aren't open minded. Only 4% of people are born "normal". 4%. And don't ever refer to gonadectomy as being castrated. Ever. You shouldn't even be on Wikipedia. People can chage info in here, and make it false. talk to specialists, before you, and everyone elde make assumptions. —Preceding unsigned comment added by Girl90210 (talkcontribs) 21:27, 18 December 2009 (UTC)

Variations Produced by Androgen Insensitivity[edit]

The taxonomy and nomenclature of this article could use a little clean up. I wanted to give everyone a heads up before I make some changes to the sections "Reifenstein syndrome," "Infertile male syndrome," and "Undervirilized fertile male syndrome."

Collectively, these three sections describe aspects of PAIS as well as MAIS. Despite the fact that there is much published research on these two conditions, you'll notice that the only source cited in any of these three sections is http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=312300. It is also worthwhile to note that the information at this URL does not do a very good job of grounding the information in the article. It's not a very long read, take a quick look to see for yourself.

Some of the changes I'd like to make include the following:

I'd like to expand on MAIS. The only mention of "mild androgen insensitivity" is under the "Undervirilized fertile male syndrome," which lists micropenis as common, sparse body hair, and concludes that "many of these men are fertile" (though the name given to this condition would presumably exclude the possibility of infertility). A reader would thus conclude that an individual with MAIS typically has micropenis, sparse body hair, and is fertile. Most men with MAIS are in fact infertile (oligospermia is more common than azoospermia or normal sperm count), and have a normal male phenotype.

"Undervirilized fertile male syndrome" is an antiquated name; it predates the modern understanding of the genetic basis for the disease. As described in the article, "undervirilized fertile male syndrome" could refer to individuals with PAIS or individuals with MAIS. Fertility or infertility is not the determinant here, rather external phenotype is. In other words, very few individuals with PAIS or MAIS exist that are not infertile, and are differentiated by phenotype; those with hypospadias, micropenis, or otherwise ambiguous genitalia are classified as PAIS, those with a normal male phenotype are classified as MAIS. "Infertile male syndrome," as described in the article, is the typical manifestation of MAIS, and is an antiquated way to describe individuals with this condition. "Reifenstein syndrome," as well as Lub's syndrome, Gilbert-Dreyfus syndrome, and Rosewater syndrome, are all names given to what is now called PAIS. Similarly, CAIS used to be referred to as "testicular feminization" or Goldberg-Maxwell syndrome.

I'd also like to modify the article to give the taxonomy more of a genetic and phenotypical basis. As many of you know, there are seven classifications that compose the spectrum from phenotypical female to phenotypical male. CAIS only includes grade 7, MAIS only includes grade 1. The rest are classified as PAIS. On the genetic side of things, it is currently understood that all forms of androgen insensitivity are caused by mutations in the AR gene except for Kennedy's disease (X-linked spinal and bulbar muscular atrophy), which is caused by an overly long polyglutamine tract in the AR gene (the polyglutamine tract is polymorphic, and it is normal for it to vary in length; when it gets too long, this disease is the result).

It goes without saying that any changes I make will be well sourced by articles in medical journals. Please let me know your feedback. I intend to start making changes next week.Jonathan.Marcus (talk) 05:58, 23 April 2010 (UTC)

I'm finally going to post my edits today. Please let me know if you have any questions about the material (where to find a particular publication, etc.) Thanks.Jonathan.Marcus (talk) 21:36, 19 September 2010 (UTC)

Terminology[edit]

I changed a sentence in the "terminology" paragraph. It was stated that patient advocacy groups worked to abandon the terms "testicular feminization" and "disorder of sex development." This is certainly true of the term "testicular feminization," but "disorder of sexual development" is a fairly new term, developed by intersex activists. It is true that some intersexed individuals do not agree with the "disorder" wording, but the term as a whole is not to be included with the term "testicular feminization." By the way, I have CAIS and am active in that community. Aisnapdragon (talk) 02:08, 18 June 2010 (UTC)

New revision, split, comments, etc.[edit]

  • Just opening a new section to talk about the revision

Thanks for adding all of this content to the article! I'll just leave some general comment here. First off I will generally agree with the tag on the page suggesting this article be split off into sections. Hopefully the bulk of that work can be shared across editors and isn't borne only by the person adding all the info. Second, I would caution page watchers not to just revert or remove large sections of the text simply because the change is so drastic. Third, is the lede image appropriate or encyclopedic? Would we be better off without a lede image or with a diagram? Protonk (talk) 19:42, 20 September 2010 (UTC)

Starting from end: the lead image description is rather misleading, otherwise I think it is a pretty interesting image although one showing more variation of phenotypes would be nice. Regarding the split I would wait with it, unless there are plans for other massive additions. If there are massive additions do them to separate articles right away, otherwise this article needs a little settling down.
Nitpicking.. "affecting 46,XY individuals" in the opening sentence needs a little more detailed explanation, there are many places that use overly technical language without real need ("intrascrotally"), which is probably the reason why there are way too many links in the text, it would be real nice if references contained PMID where possible. Richiez (talk) 21:41, 20 September 2010 (UTC)
Have organized per WP:MEDMOS so that this article is of a similar format to hundreds of other disease related articles. This article is a little big at 157,866 bites. Spiting off section as done at Obesity would be a good idea IMO. Combining refs under a single number as done at Autism for ref 51 would look better. Doc James (talk · contribs · email) 05:28, 21 September 2010 (UTC)

Hello all. Thanks for the feedback, and for helping to refine the article! My intention was to bring the article as up to date as possible, and to make it a one-stop source for all aspects of AIS (including PAIS and MAIS, which were previously underrepresented). Putting this edit together sucked up every last minute of my free time for the last five months. I did it because I know some people with the disease (it has affected my family as well), and I wanted to be able to help other families that have been affected. As you can infer from the article, there are some forms of AIS that are really hard to deal with, both physically and psychologically. Hopefully, our efforts here will help people with AIS become more informed, and subsequently have a better idea of what they want out of their medical care.
I've altered the opening statement a bit to better represent AIS as a whole (most people with PAIS have a male phenotype, as well as all people with MAIS; thus it is not entirely accurate to state that people with AIS have male genetics but have a female external appearance).Jonathan.Marcus (talk) 06:35, 21 September 2010 (UTC)

Reduced the size of the MAIS image (without the 150px field, the picture of the naked guy gets kind of huge). I think the two images showing the function and structure of the AR (File:Functional_domains_of_the_human_androgen_receptor.svg and File:Human_androgen_receptor_and_androgen_binding.svg) are a bit hard to see. Am I the minority? Jonathan.Marcus (talk) 07:17, 21 September 2010 (UTC)

  • I moved the first image. The second is liable to look "small" in any normal thumbnail resolution. The first largely looks small because of the poor text rendering @ 200 pixels. I would try uploading another version with a different font to see if you can net any improvement in readability. Protonk (talk) 19:29, 21 September 2010 (UTC)

Great job on the current revision! Chbse 13:51, 21 September 2010 (UTC) —Preceding unsigned comment added by Chbse (talkcontribs)

Likewise, great job on expanding this article! Since there are already articles on the androgen receptor and nuclear receptors that cover the structure and mechanism of AR respectively, some of the material that is currently contained in the "Androgens and the Androgen Receptor" section could be moved to those other articles. I particularly like the File:Human_androgen_receptor_and_androgen_binding.svg graphic, but I think this level of detail would be more appropriate for the androgen receptor article than this article. Boghog (talk) 19:41, 21 September 2010 (UTC)

Nice job on the references, Boghog! That must have been quite a bit of work... Jonathan.Marcus (talk) 04:10, 25 September 2010 (UTC)

What is it[edit]

The first sentence should say in lay terms what this condition is: Basically from my understanding it "a condition in which people who are genetically male have a partly female appearance due to resistance to androgenic hormones." Doc James (talk · contribs · email) 20:33, 21 September 2010 (UTC)

Certain forms of AIS (e.g. some grades of PAIS and all forms of MAIS) do not have a feminized appearance. MAIS, for example, can manifest solely with infertility --- that means you could go through life as a regular guy, and only find out you've got MAIS when you have difficulty conceiving a child with your wife, and get genetic testing. In fact, this scenario is typically how MAIS gets diagnosed. Grades 4 through 7 on the quigley scale present with feminine body types, either partly or completely, but in general this is not the case. Jonathan.Marcus (talk) 04:07, 22 September 2010 (UTC)
Yes have moved the description of the spectrum of symptoms to before the genetics discussion. Doc James (talk · contribs · email) 18:22, 24 September 2010 (UTC)
This change could be confusing to people who are not already familiar with the disease --- it first lists that the effects range from spermatogenic defect to a female body type, and second indicates that the only people affected are genetic males. Isn't it clearer to first say that this disease only affects males, then indicate that the effects are that you could have a female body type? It seems unclear to say that effects include a normal female body without first limiting the potential people that can be affected to males. Jonathan.Marcus (talk) 20:56, 24 September 2010 (UTC)
Have added the fact that we are referring to males in the first sentence. (even though techniqually I guess females could have two X chromosomes both with the defect and thus also be resistant to androgenic effects).Doc James (talk · contribs · email) 21:10, 24 September 2010 (UTC)

References[edit]

As far as I am aware the refs should come after the period not before. Doc James (talk · contribs · email) 20:33, 21 September 2010 (UTC)

It varies, depending on the reference style you use. As long as the article is consistent, it doesn't really matter. — The Hand That Feeds You:Bite 21:52, 21 September 2010 (UTC)
It is just that this is the first page I have seen formatted like this is the area of medicine and have edited a few thousand. I guess it does not really matter but consistency within a topic area is nice.Doc James (talk · contribs · email) 18:24, 24 September 2010 (UTC)

Technical[edit]

I find that the intro is a little to technical. Should be worded more simply IMO with the technical details moved to the body of teh article. Doc James (talk · contribs · email) 07:24, 25 September 2010 (UTC)

Pictures[edit]

The medical textbook pictures, while part of our history, are stigmatizing and graphic. Wiki has told me oh well, deal with it. Since they are part of our medical textbook reference history, it's 'valid' to have them on there. We respectfully disagree. In the American AIS support group, the presence of these photos is upsetting. But since no one seems to care who writes/monitors this page, all we can do is protest, with respect. 98.149.37.201 (talk) 19:58, 27 October 2010 (UTC)CAIS reader

October 2010 - Issues with the images[edit]

Hi all,

I just want to start a discussion here regarding the recent revert-war over the images associated with this article. One anonymous editor above has stated their position clearly and I've also received email from one editor here who finds the current version offensive and unacceptable. Having said that, the images that are currently in the article are relevant, encyclopedic and informative although some are likely redundant.

The fundamental issue here, however, lies with the subject itself; AIS. People diagnosed with CAIS invariably have a female body habitus and a female gender identity. For PAIS, however, things aren't nearly as straightforward. The majority of PAIS cases tend to have a male body habitus - though in various stages of undervirilization - and a male gender identity. Even this, however, isn't always the case. MAIS individuals are almost invariably male in all aspects. The article was recently completely re-written last month by User:Jonathan.Marcus who, IMO, did an excellent job in presenting all aspects of AIS, and wrote a reasonably balanced medical article. The problem, IMO, that people seem to have with the article, is that CAIS and PAIS has been lumped together into one article. Some women who have been diagnosed with CAIS find it objectionable that there are also images of PAIS subjects with a clear male body habitus. These pictures are "stigmatizing and graphic", "upsetting" and "offensive", to use their words and, to be honest, I can see why this would be the case. The article also has clear sections on CAIS, PAIS and MAIS as all these come under the umbrella of AIS conditions but the images themselves are somewhat sprinkled throughout and don't necessarily line up with the relevant text. This can be misleading and confusing to the reader and, clearly, can also lead to them being connected to CAIS conditions, which is also problematic for some people.

Wikipedia claims to be a neutral, informative on-line encyclopedia which anyone can edit and obviously, some things, though factual, can be offensive. This is one of those times where there needs to be a balance between objective documentation of a well-known medical condition and consideration and sensitivity towards people who have been afflicted with this condition. I personally believe that, yes, Wikipedia is not censored but there is still an obligation to treating a subject such as this with sensitivity and human compassion.

So - some questions and possible solutions. Can we possibly remove images that are redundant or repetitive or possibly irrelevant? How many images of under-virilized males are needed here to be illustrative? Can the images be re-aligned so they are displayed alongside relevant areas of the text. Is is even possible (or desirable) to split the article into a basic overview of the condition at Androgen insensitivity syndrome, followed by comprehensive articles at Complete androgen insensitivity syndrome and Partial androgen insensitivity syndrome?

I'm not really editing Wikipedia myself any more these days (RL is more fun :) ) but want to state the issues here so everyone can discuss this and come up with some sort of solution, hopefully - Alison 04:33, 28 October 2010 (UTC)

  • I think the issue of lumping conditions together would be solved by a careful split of the article, something I discussed with the principal author before the change went live. I think he added the suggested split template in the hopes that someone would come along and help break out thematically distinct sections. I also made some comments about specific images before they were added because jonathan was concerned about meeting the NFCC. I will copy some of those comments over here later. Protonk (talk) 18:49, 28 October 2010 (UTC)
  • The proposals by Alison and supported by Protonk are very reasonable. AIS is a spectrum of conditions with a common underlying mechanism. Hence it would make sense to have an AIS overview article. At the same time, the CAIS and PAIS phenotypes are significantly different and therefore each condition deserves to have its own article. The proposal to move some of the material contained in this article into separate PAIS and CAIS articles would address, in part, the very real and legitimate concerns of affected individuals who have expressed their opinions on this talk page. Finally I agree with Alison that we should very carefully scrutinize each and every image to make sure that they are necessary and remove any redundant images. Boghog (talk) 17:46, 29 October 2010 (UTC)
  • I should note here that to the best of my knowledge all the images are taken from medical journals and each image has a pretty detailed FUR explaining the purpose and need for the image. Obviously I am not suggesting that meeting FUR is sufficient, but many of the arguments in support of retaining the images are already on the image talk page. Protonk (talk) 17:51, 29 October 2010 (UTC)
  • I agree that Alison's proposal is a good idea. This weekend, I intend to split the article into one main page, and three sub-pages (one for CAIS, one for PAIS, and one for MAIS). As Alison has noted, this will take care of the problem with pictures from one condition being confused with another. Some readers will not be satisfied with this solution, and will push to have all medical photography deleted from all the AIS pages. Their argument is that medical photography, in general, is "stigmatizing" and unethical, and does not benefit Wikipedia readers. Jonathan.Marcus (talk) 18:14, 29 October 2010 (UTC)
  • Thanks for pointing out the FUR that was attached to each image. I wasn't aware of that. Also I would like to reiterate that I think User:Jonathan.Marcus has done an incredible job of expanding this article. As Alison has stated, we just need to find the right balance between factual documentation of this condition and sensitivity toward affected individuals. Boghog (talk) 18:22, 29 October 2010 (UTC)
  • Also, though it does not stand in as a replacement for a sensible review of the images, all of the potentially sensitive images are also on the bad image list, meaning that they are technically prohibited from being shown on pages other than AIS. Protonk (talk) 19:41, 29 October 2010 (UTC)

Not sure about that statistic regarding PAISers. I only know of female PAIS people. I've never heard of MAIS. Is this a new term? Is it really true that there are more males with it then females? As for the images, yes yes and yes to removal for redundancy, repetitiveness and irrelevancy. As few 'historic' photos as possible would be ideal. In most cases, these photos were taken ***without the consent of the patient*** or with extremely strong coercion. Additionally, one cannot really say that any photo is a clear and accurate 'representation' of what a 'typical' AIS (C or P) body type looks like. Every single body is different, in both the intersexed world and non-intersexed world. Just because something is part of our history does not mean it necessarily has to be displayed. Respectfully, 98.149.37.201 (talk) 16:34, 28 October 2010 (UTC)CAIS Female

Hello all,
When someone in my family was diagnosed with AIS, the first thing I did was turn to Wikipedia and read about it. Although it may sound sappy to say this, I feel that we are very lucky to have something like Wikipedia to turn to in exactly this kind of circumstance; twenty years ago, we'd be stuck with the singular option of going to the university library, and manually searching through books and journals to get information like this. Armed with a basic understanding of AIS, I continued my search, and turned next to online medical journals.
After researching AIS for a few years, I always meant to "pay back" Wikipedia by giving the AIS page an update. While it was a great place for me to start my research, it was quickly apparent that the article was out of date in some aspects: general information, taxonomy / nomenclature, treatment options, etc. Some information, like the history of AIS, was missing, and other sections, like the ones that detailed the cause of AIS, were a bit incomplete. It was my intention to put all of the information that I had gathered by scouring the medical journals into a single place, so that it could be used as a reference for all people affected by AIS and their families. That brings us to the present.
The current article details all forms of AIS; previously, the Wikipedia article focused mainly on CAIS. While it is true that CAIS is the most common form of AIS, it is important that the other two groups, PAIS and MAIS, are represented. All three forms have unique features, treatments, and come with their own social and psychological challenges. I bring this up to make the following point: It is no more fun for a woman with CAIS to see an image of a male representing the disease as a whole, than it is for a man with MAIS to see an image of a female representing the disease a whole. The fact of the matter is that neither image (or phenotype) can represent the entire spectrum of phenotypes that AIS comprises; as editors, we have made several revisions to the opening paragraph to show exactly this kind of sensitivity.
All individuals with MAIS have a male phenotype, all individuals with CAIS have a female phenotype, and those with PAIS make up a continuum of the phenotypes between the two. All three groups face unique social and psychological challenges, all of them deserve our sensitivity, and all of them deserve to be represented in the article. I don't think it is appropriate to accommodate one group of AIS at the expense of another. A man with MAIS deserves the chance to compare his own body with an image of someone with MAIS just as much as a woman with CAIS deserves the chance to compare her own body with an image of someone with CAIS. For individuals with PAIS, I chose to include an image of someone with grade 3 PAIS since it is the most common form of PAIS.
The reason why I chose to also include an image of the genitalia of an adult with grade 4 PAIS is a little more complicated. The reader will note from the sections on management that there is quite a bit of controversy regarding genitoplasty (and with good reason). I made a deliberate effort to bring the very latest consensus and information to this section so that affected people (and their parents) could go into this decision as well equipped as possible. I found it important to include an image of what complications typically occur when feminizing genitoplasty is performed at infancy; the current consensus is that this should be avoided until puberty, since it often causes functional impairment (or even complete loss of function and / or sensation). I imagine that more and more people will choose to wait on this type of surgery, and as such, will want to know what to expect. The image of grade 4 PAIS is important for this reason: it shows people what to expect. It is difficult enough to have a condition that challenges your sense of gender identity and / or "normalcy"; it is more difficult still to wonder what you are going to "turn into" because you decided to wait on surgery. This image helps counter fear with fact. While it is disturbing, it is probably a lot better than what can be imagined if it was missing.
The anonymous editor at 98.149.37.201 brings up a few points regarding the ethics of medical photography and the variation in phenotype in AIS. While it is true that some physicians have gone about medical photography in an unethical manner (such as through coercion), especially in the earlier days of AIS, not all medical photography is gone about in an unethical manner. It should be noted that even the latest consensus argues that medical photography is important (but should be done in a very specific manner). The images depicting PAIS were taken very recently. The images depicting CAIS are older, but were selected for their "generic" quality: information that uniquely identifies an individual is absent. The image depicting MAIS is from the 1980s, and also lacks identifying information. While it is also true that four images cannot possibly depict every possible point in the continuum of phenotypes that are included in AIS, it is also true that their usefulness is not negated by this fact.
I know that the four images in question have not seen the last of this debate, but I hope that I have shed some light on the need for their inclusion. On a side note: The anonymous editor at 98.149.37.201 has asked about how I came to determine that the majority of people with PAIS are raised male. I'm guessing that what anon means is that she doesn't have access to the cited articles, since all statements that refer to this fact are well cited. If you are interested, I can help out by emailing you a copy of whichever article you'd like to read (but to comply with laws, it must be for your non-commercial use only). Let me know.
She also points out that most of the people with PAIS that she knows are female, and that she is a member of the American AIS support group. It is worthwhile to note that the AIS support group has evolved predominantly as a women's group. The following is a direct quote from the AISSG website [1]:
People with 'mild PAIS' who have concerns particular to a male phenotype and/or role need to be aware that our organisation is run by women and has evolved to-date predominantly as a women's group. We have provided phone support and general information to a number of PAIS men over the years and offered them all the benefits of membership, but have only ever had a few male subscribers. We have tried to encourage these, and other male enquirers, to get together and develop a full support function for men, either as part of AISSG or separately, but this has not really got off the ground as yet. We would welcome an expansion of facilities in this direction.
Thanks. Jonathan.Marcus (talk) 23:01, 28 October 2010 (UTC)

"Encyclopedic" and "informative" as they may be, these photos are incredibly hurtful. I can't teach you compassion or make you understand, but please just know that to me, and to any other person with AIS, those pictures represent how marginalized and objectified we have been by the medical community. Imagine being forced to have a myriad of doctors stare at your naked body and touch you inappropriately while your face is hidden. It was a disgusting practice. Furthermore, the photo of a CAIS woman is totally ridiculous. She looks like any other woman- that's kind of a major thing about CAIS, no? By the way, I have CAIS. Please, listen to what women who actually have this syndrome that you seem so interested in have to say: the pictures are hurtful. You can rationalize all you want, and that's all it comes down to. You either care about being hurtful or not.Aisnapdragon (talk) 04:16, 29 October 2010 (UTC)

__________________________ Mr. Marcus and Ms. Snapdragon, Thanks so much for your commitment to this discussion. I am butting my little nose in as one who has never edited a wikipedia page, and truthfully, never intended to, until this issue came up. I wonder, Mr. Marcus, if you have discussed these photographs with your family member. Perhaps that would be a good jumping off point. Now I am certain, as I have a pre-teen and no matter what I ask her to do she comes back with the exact answer that will best justify her desires, that you will be coming back with a reply of, "my family member does not mind at all." Of course. Perhaps then, we can expand that question to whether or not your family member feels that they have the capacity to answer that question for all with this condition, or if she has polled all with this condition and they also do not mind.

I wonder if you would agree that bringing in a member of the medical community who can speak to the need for these photographs to be displayed to the general public. I would think that we could get in touch with someone who could better answer these concerns than you or I; persons who have been touched by this condition... you through a family member and I as a woman with CAIS... who neither of us are experts. Thoughts? -- Kernsrb —Preceding unsigned comment added by Kernsrb (talkcontribs) 15:41, 29 October 2010 (UTC)

The person in my family that is affected with AIS gave the opinion that he thinks that other people may not have access to similar images, and thinks that anyone who says they should be taken down either doesn't benefit from them, or has already benefited from them. Aisnapdragon makes the point that women with CAIS look just like any other women. Perhaps that is why the images are not as important to people with CAIS. That is not the case with PAIS and MAIS. Do you not see that other people with other kinds of AIS do not have the same luxury as you to dismiss the pictures as unimportant? Is it difficult to see that it is quite important for people with the other two kinds of AIS to be able to see what to expect? It is unfair to them to remove these pictures just because you don't benefit from them (or already have, when you first saw pictures yourself). While no one in my family is affected with the CAIS subtype, I would still wonder if other pre-teen girls with CAIS would not benefit from seeing photos that show that they will look like "any other woman," as has been pointed out. It sounds more like you would rather be able to benefit from the images in private instead of them being made public. Not everyone has access to these images, and thus does not have this luxury.
As far as bringing in a member of the medical community is concerned: I wonder if the people who want the images removed feel that way about medical photography in general. Aisnapdragon tells me that she "can't teach me compassion," implying that anyone who is in favor of keeping the images cannot have compassion, and goes on to describe medical photography as though it was done unethically every time. Neither of these statements is true; by removing the images, she would be showing a lack of compassion for the people that will benefit from them. Medical photography is still an important part of medicine, and is still practiced. It does not have to be done unethically, and many people, including my own family, do in fact benefit from it. There are guidelines in place to ensure it is done ethically that were not in place years ago. This is no longer the dark ages of AIS, and it is no longer necessary to treat each photograph of an individual with AIS as though it depicts some kind of rape. Jonathan.Marcus (talk) 17:34, 29 October 2010 (UTC)

Quoting: "Aisnapdragon makes the point that women with CAIS look just like any other women. Perhaps that is why the images are not as important to people with CAIS. That is not the case with PAIS and MAIS. Do you not see that other people with other kinds of AIS do not have the same luxury as you to dismiss the pictures as unimportant? Is it difficult to see that it is quite important for people with the other two kinds of AIS to be able to see what to expect? It is unfair to them to remove these pictures just because you don't benefit from them (or already have, when you first saw pictures yourself)." I am very saddened that you would take this discussion to this place. In no way, shape, or form am I insinuating that other forms of AIS are "unimportant." The point I was attempting to make is that women who have CAIS are externally typically female. I was speaking only to the photo of the "CAIS woman." I find it redundant to post a photo of a women who looks exactly like any other, non-affected woman. And furthermore, I know several women with PAIS, and not one of them has ever expressed interest in medical photography. Quoting: "It sounds more like you would rather be able to benefit from the images in private instead of them being made public. Not everyone has access to these images, and thus does not have this luxury." What? How on earth could you possibly draw this conclusion? Why on earth would I want to have access to photos of unidentified female body parts privately? Why would you think I have "access to these images" to be used in private? Do you think I keep a photo book of medical anomalies? For the record, I was photographed at age 6, and was not given the photo- neither were my parents. I do not know what medical journal/textbook it ended up in or who has access to it today. There is no way for me to benefit from those photos. If I want to know what a woman with CAIS's genitals look like, I can look at my own. I don't have any interest in seeing the genitals of a woman with PAIS, either. Not because I find it "dirty," but because I know what to expect already. Finally, looking at those photos is not a "luxury." You're absolutely correct that medical photography is vital. However, it is absolutely unfair of you to brush off the feelings of those who posed for photos unwillingly. Of course it's not the dark ages of AIS anymore. The conclusions you drew from what I wrote were truly confusing and far-reaching. I don't expect the pictures to be taken down, much as I would like for them to be. I stated my opinion and now I'm done.173.16.46.8 (talk) 22:01, 29 October 2010 (UTC) 173.16.46.8 (talk) 22:00, 29 October 2010 (UTC) —Preceding unsigned comment added by 173.16.46.8 (talk) 21:58, 29 October 2010 (UTC)

Hi Anon,
It sounds like you have a good reason to be distrustful of medical photography. However, I don't think you can assume that the subjects in the photos used in this Wikipedia page are unwilling. They are all adults, and (according to the authors) have given consent, and are aware that they are being photographed (they are standing, facing the camera after all).
You make my point for me when you say that you are not interested in these photographs because you "know what to expect already." Please have consideration for those who don't know what to expect and thus who stand to benefit from the photographs. If you were able to gain knowledge regarding your condition from a source that wasn't in the public domain, then in fact you did learn in private. Reason stands to argue that if you are against these images being publicly available, then you expect other people to gain this knowledge in private also. Not everyone has access to such sources, and having access to these sources is in fact a luxury that not many can afford. Certainly our doctor did not provide us with any literature.
I think if you stop for a moment and reconsider your position, you'll see that images of AIS phenotypes are appropriate and helpful for patients and their families, as well as any member of the medical community that may stumble upon this page. In the past, the image that was used was a poor quality image of a random hypogonadal male in a hotel room --- someone that wasn't even affected with AIS (see File:Men_with_micropenis.jpg). If we removed the images that are currently on the page, that would only result in the proliferation of poor quality / inappropriate images like that one, since other authors see the need for an image of some kind.
If you are concerned that one or more of these images may have been obtained in an unethical manner, this would be the place to bring up your findings, and certainly no one would object to you suggesting a suitable replacement image. Thanks. Jonathan.Marcus (talk) 06:42, 30 October 2010 (UTC)
Just because you are a.) an adult, b.) aware that you are being photographed and c.) facing the camera does not mean that you want your picture taken or especially that you want your picture on Wikipedia. I'm advocating for a ****drawing**** of the syndromes. It would still be a visual and no one's privacy would be violated. Chances are these women were told it was for the doctor's records only. That was certainly my case and many others. Imagine our surprise when we too went to medical libraries to research and found pictures of US. Please be more sensitive to this - again, as a NON AFFECTED MALE, you sort of? are guessing? as to how WE might feel. Respectfully, 71.105.84.186 (talk) 22:14, 30 October 2010 (UTC)CAIS woman
Any research undertaken by individuals working for a university in the united states would have a clear consent forms for subjects. At the very least, the consent forms they signed indicated that the material could be used for publication. Protonk (talk) 23:24, 30 October 2010 (UTC)
I agree. It seems presumptuous to assume that since some medical photographers have obtained images unethically then all medical photography is gone about unethically. It is also worthwhile to note that the two images of CAIS women have appeared in both medical journals as well as biology text books (see refs 16 and 17 in the article), and are quite widely circulated; our publication would not be their first exposure to the public. Jonathan.Marcus (talk) 04:50, 31 October 2010 (UTC)
Respectfully, I again must disagree. The images may have been obtained with all the i's dotted and the t's crossed, but that does not mean the patient or the parent of the patient knows what will be done with the photos. For example, my photo was taken and my mother was told that it was for the doctor's records, because I was so pretty. No mention of publication was ever discussed. It may have been in the fine print. Often, when photos are taken, parents are still in shock from the diagnosis. Once again, your discussion shows a desire to do what you think is the right thing, while doing the wrong thing. In other words, welcome to our world. With respect, 24.43.87.130 (talk) 15:11, 31 October 2010 (UTC) CAIS woman
I'm not prepared to engage in nihilism about all medical imagery, though I understand that there is a gap between patient understanding of the consent form and the written text. Conscientious researchers will strive to narrow or eliminate that gap and institutional review boards subject medical photography to relatively strict scrutiny (in general). Obviously this doesn't prevent specific cases of abuse but the channels for dealing with that are not to remove medical photography from an article but to deal with specific images.
And I'll make a comment on sensitivity. The purpose of wikipedia is to present an encylopedia that may be used on any subject, in any place, and at any time in the world. As such, we have the potential of being torn between multiple allegiances. Some countries will want their history portrayed in a certain way. Some religious groups will offer strong and convincing evidence that our portrayal of their prophet is not something a person of their faith could read or create. Some professional groups may ask us to take down something they view as a trade secret, even though it has long lapsed into the public domain. These three examples are not hypothetical. They are real and have attracted public scrutiny, lawsuits and sometimes threats of violence. Honoring these requests piecemeal when doing so runs contrary to our primary mission both compromises the integrity of the encyclopedia and invites further requests (those now armed with the knowledge that we have done it once already). As such, it is an affirmative property of the encyclopedia that it is not censored to meet individual demands about sensitivity. We are not censored. I give the above explanation in the hopes of convincing you that our stance on censorship is not some childish or techno-libertarian manifestation of "because we can, we will". A great deal of (largely unobjectionable) information is on wikipedia "because it is there"--available freely online, in the public domain, or otherwise easily accessible. However, images and texts which are kept because of our stance on censorship are not there due to convenience or pique. There would be nothing easier than removing information about Rorschach tests, or Muhammed. We do not keep those images in wikipedia because it is easy but because it is hard. We have a mission to preserve and present information about every topic on earth and removing salient information due to censorship conflicts deeply with that mission. This discussion can and should continue, but I will say right now that you will see limited traction from an argument on the basis of sensitivity alone. Protonk (talk) 17:17, 31 October 2010 (UTC)
I have to say LOL. The ONE good picture of the women as a group has been taken down. All the stigmatizing photos remain. Way to go! The illustration is great, but now even the visual image of women with AIS is gone. Gone! If only they had worn some blackout tape on their eyes. Or someone had lowered the camera just a leetle bit. Then you guys would be all over it. With slightly less respect than before 98.149.37.201 (talk) 20:23, 1 November 2010 (UTC) CAIS woman
Hi Anon,
I have to say, the only reason that the image of the group of AIS women has been removed is because of your complaints. If you recall, there was quite a bit of discussion about how people with CAIS may be confused when they see images of men with PAIS and MAIS in the article, and similarly, for men with PAIS to see images of women with CAIS, etc. As a result, Alison proposed that the article be split apart so that the sections (and corresponding images) regarding each subtype of AIS (e.g. CAIS, PAIS, and MAIS) be separated out into individual articles. We all agreed that this was a good idea, so I performed the split over the weekend. The image of the group of women with AIS is included in these potentially "confusing" images; the only place it belongs is in the article for CAIS. As a result, the lead image is a 3-D representation of the androgen receptor protein. The appropriateness of the image of the group of AIS women as the lead image had been questioned before (see Talk:Androgen_insensitivity_syndrome#New_revision.2C_split.2C_comments.2C_etc.; however, your complaints tilted the balance.
Obviously, I can't please everyone all of the time. I'm doing my best to make the article as helpful to as many people as possible. I, and other editors here, have been trying to accommodate you as well. If you are unhappy with the changes that have been made as a result, ironically, you have no one but yourself to blame. Jonathan.Marcus (talk) 23:24, 1 November 2010 (UTC)
Agreed. However, it should be obvious even to you guys that we wanted the ***stigmatizing*** photos removed and replaced with illustrations. There was never any mention made of the cover photo. And fwiw, I don't blame myself for anything.71.105.84.186 (talk) 14:40, 2 November 2010 (UTC)CAIS woman
I am confused! Jonathan stated that the logic behind posting these pictures to begin with is to help those diagnosed with AIS because he has a family member with AIS. However the posting of these pictures has caused nothing but outrage amongst the AIS community. It would seem prudent to me if I were going to take so much of my personal time to compile information to post on Wikipedia regarding AIS that perhaps I would contact or work with the largest and only group of individuals with AIS, AISSG. Jonathan's motives are confusing to say the least and if he is truly trying to post information that is helpful to those with AIS I wish he would listen and realize by posting exploitative pictures he simply doing more harm than good. (yet another CAIS woman) —Preceding unsigned comment added by 216.49.165.145 (talk) 17:34, 2 November 2010 (UTC)
Hi, I just wanted to address the issues with the naked photos on this page. Being someone who loves medicine and is pursuing a career in science, and an individual with a Disorder of Sex Development similar to AIS, I appreciate the medical information given on the page, but I take issue with the pictures for a few reasons. One is that I don't think it adds anything to the value of the quality of the information. The pictures don't tell me much about the affected individuals other than the fact that the people who took the pictures totally disregarded their privacy and had them pose for embarrassing pictures. If you would talk to people who had to stand cold and naked in a doctor's office with medical students and residents around them, you would hear how much pain and emotional damage is behind these pictures. Another thing you have to consider is how many young adults who turn to internet after given their diagnosis to get some information and solace. Can you imagine how a girl feels after seeing pictures like that? How she will view her body from that moment on. Instead of getting time to adjust to this new idea, she will label herself as a freak. Labels like that stick to a person and mess with their minds in ways you cannot imagine. Wikipedia was founded to bring information to the world, not emotional damage. Please remove them and insert pictures which will educate instead of degrade. 66.128.15.105 (talk) 19:11, 2 November 2010 (UTC)

____Obviously this issue is still getting a bit of traction around here. I find it hilarious that the picture of those with AIS who VOLUNTARILY placed a picture on this page was removed while obviously stigmatizing pictures remain -- and that was blamed on the person trying to remove the stigmatizing pictures. Shades of "Well, you were asking for it wearing that short skirt and all?" Further, that photograph represented women with all manner of diagnoses, not just CAIS. Yes, Wikipedia is uncensored, but does that mean that it needs to house extraneous and hurtful information as well? These stigmatizing, unnecessary and unethical pictures are unwanted at this point. I am beginning to think that the person who posted them has an axe to grind. ---kernsrb —Preceding unsigned comment added by 173.26.221.129 (talk) 20:27, 2 November 2010 (UTC)


I appreciate all the work people are doing to make this the best page possible, but I think you are missing the point of the people who actually have these conditions. While it is admirable that you are doing this because someone in your family has AIS, I don't think you understand how often the best intentions and choices that family members make in an effort to protect and support us are often the MOST harmful. Look, you don't get what it feels like to see these photos - you haven't met the women who 20 years later still break down when they talk about the humiliation behind how those photos (and others) were obtained. Diagrams will do more than enough to help someone understand their condition without the stigma attached to these photos, so please, just listen to us - we live this, we know what we are talking about. Your intentions might be great, but you are doing harm -- I can't imagine why you'd feel the need to continue after hearing just that.

Oh, and as the person who posted the non-stigmatizing picture here, you are wrong that it only belongs to the CAIS page - there are a couple of PAIS and Swyers women in the picture as well. THAT is how we want to identify ourselves, not these ghastly pictures you keep insisting on. We are not some fluke out of the population of women with these conditions - we are the ones who have enough support and knowledge behind us to have a voice. Please listen to it. - Kimberly (PAISerenity) —Preceding unsigned comment added by Paiserenity (talkcontribs) 20:29, 2 November 2010 (UTC)

Honestly, this discussion can be boiled down very easily. The people who are advocating leaving up the stigmatizing photos are NOT affected by AIS of any kind, while the people advocating for taking the stigmatizing photos down ARE affected by AIS. It stands to reason that those NOT affected by AIS might take a step back and realize that they are not affected, have no idea what it is like to be affected, and come to the conclusion that perhaps they are not in any position to make decisions regarding the photos. I appreciate the oft-repeated sentiment of making the page accessible and informative to all persons affected by AIS. However, this issue again boils down to the aforementioned issue: YOU ARE MARGINALIZING AIS INDIVIDUALS BY POSTING THESE PICTURES. There is always going to be a rational, logical retort for you to counter with. However, we always end up in the same place. We, as individuals affected by AIS, are advocating for ourselves by having those photos taken down. You, as Wikipedia enthusiasts, are making that incredibly difficult because you are engaging in semantics while ignoring the emotional aspect of the situation. Those pictures = nightmares. End of story. Please listen to people who are actually affected by this syndrome that you (quite oddly, I may add) seem to be fascinated with. Aisnapdragon (talk) 22:53, 2 November 2010 (UTC)
Thank you for putting the group photo back up. A tiny step. 98.149.37.201 (talk) 23:01, 2 November 2010 (UTC) CAIS woman

I'd really like to engage in a meaningful discussion about this subject, but really, it is quite difficult when the actual issue that is at hand is constantly being skirted. The real issue here is THE ETHICS OF MEDICAL PHOTOGRAPHY. I think that those of you that have had bad experiences with medical photography because the person who took your pictures forced you into it, deceived you into it, etc., are focusing exclusively on your bad experience and are completely ignoring that these photographs themselves actually do help people. There is nothing, absolutely nothing stigmatizing or shameful in a photograph of a naked body. Nothing. The very thing that the CAIS images confer to confused young women is that they in fact do look like every other female. Likewise for the images of MAIS men. When you have been diagnosed with a disorder like AIS, this is very much a valid issue. I am truly, truly sorry for anyone that has had a bad experience with medical photography, but medical photography is actually a good thing when it is done ethically and responsibly, and it in fact does help patients, their families, and their doctors understand the disorder. You can continue to pretend that I am posting these pictures because I am some kind of sadist, that "I have an axe to grind," etc, but this is in fact the opposite of the truth; the truth is that I am not at the center of this argument, rather the utility value of medical photography is at the center of this discussion, albeit in a most covert way, and those that have decided that medical photography should be phased out because of the unethical practices of the past are the ones with the axes to grind. I stand by these pictures because they do help people, and I am opposed to you taking them down just because you are too blinded by your feelings for medical photography in general to be able to see that medical photography is in fact helpful, and will in fact help physicians and patients alike. This is the very reason why medical photography continues to this day, and why it is appropriate for an encyclopedia to have medical photographs in one of its medical articles. Jonathan.Marcus (talk) 02:20, 3 November 2010 (UTC)

Well, as for the ethics of medical photography with respect to patients with intersex conditions in particular, your convictions, genuine though they may be, are patently false. When and where has it been established that medical photography of intersex patients is beneficial to them? Do you actually believe that a discussion of these pictures can be subsumed in a defense of medical photography generally and thus removed from the specific social and psychological implications of being intersex (due to some benefit that you seem to be unable to describe other than through its affirmative existence)? Whether or not medical photography does or does not help "patients" as some indistinguishable group, for the vast majority of us who have been diagnosed with an intersex condition, IT DOES NOT. The "very thing" the images confer on someone with CAIS is not that "they in fact look like every other female." Rather, they confer a confirmation that the very presence of her seemingly normal-looking body is a medical aberration worth noting. No one in the AIS community cares if you have an "axe to grind." Rather, we are deeply offended by these photographs, whether or not we had "a bad experience with medical photography." It is not that experience which is central to our reaction to the photos. Rather, it is the experience of finding out that we don't fit within the most basic social conception of human existence. The experience of finding out that we belong to a class of people that is (when not completely outside the consciousness of mainstream society) seen through the lenses of, at best, awe and pity, and at worst, mockery and disgust. All these photographs do is confirm that status. I urge the editors of all AIS articles to remove all of the medical photographs in question. -PAIS female —Preceding unsigned comment added by 72.225.166.103 (talk) 05:39, 3 November 2010 (UTC)
One instance where medical photography used in this article would be useful to women with PAIS as well as their families and their physicians is regarding genitoplasty. As a woman with PAIS, I'm sure you are aware of just how many parents in the past have unintentionally harmed their daughters by performing extensive feminizing genitplasty on their infant PAIS daughters. This is exactly why I have included a photograph of the genitalia of a woman who had this kind of surgery performed on her as an infant --- so that people can understand the gravity of the complications that can result. A drawing is not going to effectively do the job that this photograph does. Jonathan.Marcus (talk) 06:29, 3 November 2010 (UTC)

Purpose of wikipedia and this article[edit]

I've carved out this sub-section to make clear a fundamental point. There seems to be some conception that the purposes of images in this article or on wikipedia is to do something other than inform the reader. This is false. Wikipedia is not a support group. We are not providing content to make people feel better (or worse, necessarily). We don't want to add images or text gratuitously, but where images are necessary their inclusion will not be determined by whether or not they make a class of readers feel good or bad. Repeated assertions of special knowledge (e.g. "you don't have AIS so you can't understand how these images make people feel") or demands that images be redacted or removed on the basis of sensitivity alone will eventually fall on deaf ears. That is harsh, but I want to make sure everyone commenting here understands this right at the gate so you don't waste your time petitioning for an image removal that will not happen. Let me reiterate. It is not sufficient that you or anyone else is upset or angered over a particular image. Images are added to wikipedia articles because they add necessary information that text or illustration could not. They are removed only if they can be replaced by text or illustration. If an image is both unnecessary and hurtful, it will be swiftly removed, but necessity is the critical component.

Obviously these images are especially inflammatory for a variety of reasons, not least that medical imagery has not always been ethical, that images of genitalia are often deeply problematic, and that the variants of AIS occasionally carry a deep social stigma which support groups, medical professionals and individuals have fought to shake off. However, each of these images contains a specific justification (found on the image preview page, if you click on the image you will see it), denoting the reason why the image is on the page it is on. We require such a justification for non-free images in general, but these are particularly well reasoned. Please take time to read these rationales and try to understand the perspective of the article authors in adding these images. Assume good faith. We aren't here to stigmatize or demonize people with a specific condition, nor are we here with an "axe to grind". Protonk (talk) 17:51, 3 November 2010 (UTC)

Pseudohermaphroditism[edit]

Hi Arcadian,

It is my understanding that "male pseudohermaphroditism" was diagnosed when an individual with an XY karyotype and testes had "undermasculinized" genitalia, which includes all people with CAIS and some with PAIS (the latest consensus suggests replacing the term with 46,XY DSD). It is my understanding that if the Y chromosome is not present, then the diagnosis of "pseudohermaphrodite" is not made; rather a diagnosis of XX sex reversal is made. This is why the text in question states: '"Pseudohermaphroditism" has, until very recently [33], been the term used in the medical literature to describe the condition of an individual whose gonads AND karyotype do not match the external genitalia in the gender binary sense.' If the "and karyotype" clause was removed from this statement, it would not technically be true... Jonathan.Marcus (talk) 18:22, 30 October 2010 (UTC)

Source? --Arcadian (talk) 19:52, 30 October 2010 (UTC)
The source cited, "Consensus statement on management of intersex disorders", equates a "male pseudohermaphrodite" as "46,XY DSD", and "XX sex reversal" as "46,XX testicular DSD." In other words, if testes are present and the karyotype is not XY, this is not pseudohermaphrotidism. Jonathan.Marcus (talk) 20:25, 30 October 2010 (UTC)
If you genuinely believe the reference supports the statement "Pseudohermaphroditism" has, until very recently, been the term used in the medical literature to describe the condition of an individual whose gonads and karyotype do not match the external genitalia in the gender binary sense, then I will not reinsert the fact tag. --Arcadian (talk) 21:17, 30 October 2010 (UTC)
Yes, I do genuinely believe this. However, if you would like to add an additional citation to ground this aspect of the statement further, I won't stand in your way. For instance, many of the articles that define AIS will mention that both a Y chromosome and testes are needed for the diagnosis. If a Y chromosome is present, but the gonads are ovaries, then the diagnosis is XY sex reversal. If testes are present, but a Y chromosome is not, then the diagnosis is XX sex reversal. A good place to read about the various differential diagnoses of DSD is "Disorders of Sexual Differentiation" in Harrison's Endocrinology (reference number 26 in the article). The section of the Wikipedia article that deals with diagnosis lists additional sources that have information of this kind. An article that is specifically on AIS that indicates that both testes and a Y chromosome are needed for an AIS diagnosis is Hughes' "Androgen resistance" from Best Practice & Research, Clinical Endocrinology & Metabolism (reference number 1 in the Wikipedia article).
The reason I cited only reference 33 ("Consensus statement on management of intersex disorders") is because these other aspects of AIS (definition, diagnosis, genetics) are covered in other sections, where they are grounded by other sources. The only new information that is introduced in the "Pseudohermaphroditism" section is concerning nomenclature (AIS vs. "pseudohermaphroditism" vs. DSD etc.). I thought that the number of citations was already a bit much, and if I ground every fact in every statement every time it is referenced, then the superscripts will only grow in number...
To sum up what I am trying to say: the Wikipedia article first mentions that a Y chromosome is needed for an AIS diagnosis in the introduction. The article mentions that the gonads are testes in the "Signs and Symptoms" sections. And lastly, AIS is differentiated from other disorders such as XX sex reversal in the "Diagnosis" section. I didn't think I needed to re-ground these claims any more thoroughly than ref 33 already does, since the article explicitly grounds each of these facts in preceding sections. This paragraph is just trying to talk about the history of the word "pseudohermaphroditism," how it is currently dependent on both gonads and karyotype vs. external genitalia, how it used to be only dependent on gonads vs. external genitalia, how the word came to exist in the first place, and what people think about the word when it is used now. Again, if you are still concerned that the other aspects of this statement need to be more explicitly grounded in this particular spot in the article, I won't stop you. Jonathan.Marcus (talk) 23:25, 30 October 2010 (UTC)

Phenotype-specific conditions[edit]

Androgen insensitivity syndrome, in general, is not associated with breast cancer; rather there are two known mutations that have resulted in breast cancer, and the affected individuals have always been PAIS men. In other words, there have been no case reports that associate breast cancer with CAIS, or with women with PAIS. These two particular mutations occur in the DNA binding domain, and seem to cause the AR to do some things that it normally does not, and the incidence of breast cancer in these men is quite high (see citations 88 and 90 for the full case reports). I have attempted to clean up the language around these sections to clarify. Also, there are a few other sections where phenotype was important. Specifically, the section regarding the trinucleotide satellites. I have altered the text here as well to clarify. Lastly, there was some editing done to replace the word "masculinize" with "virilize." While these words are often used interchangeably, there is a subtle difference: virilization is typically used to describe secondary male sexual characteristics. For example, women with PCOS have elevated androgen levels, and may experience symptoms of virilization such as facial hair, deepening of the voice, etc. "Masculinization" is the development of primary male characteristics, such as the masculinization of the undifferentiated genitalia. Source: Ref-Harrisons Internal Med(17th ed), Dorland Med Dictionary. Jonathan.Marcus (talk) 06:20, 3 November 2010 (UTC)

The term virilization is sufficiently general enough appropriately express the concept you are trying to express. The article for virilization explains its use as both for primary differentiation and secondary sex characteristic differentiation. Quote from Wikipedia article on virilization " Virilization is most commonly used in three medical and biology of gender contexts: prenatal sexual differentiation, the postnatal changes of normal male puberty, and excessive androgen effects in girls or women.". In addition to that expressing breast cancer among women with CAIS as specifically male breast cancer is a loaded statement. The pathology of breast cancer in either gender is the same. Articles on wikipedia relating to breast cancer discuss how the progression of the disease is independent of whom owns the breast. Women experiencing the effects on any disease state are just that women, the use of language to the contrary is at best insensitive and at worst intentionally disrespectful. By design Wikipedia content, is community driven content, science is science but language is a human construct and as such is subject the emotional connections. I object the majority of reverts made to the page on a moral and scientific basis. Cristina299792458 (talk) 11:52 2010Nov3

Grammatical errors and inappropriate language[edit]

This article has numerous grammatical errors. If I had the time, I would fix them, but, alas, I put it on someone else.

In addition to potential errors around the mechanics of the english language, there is an active effort to use loaded language. This is inappropriate and violates the spirit of the Wikipedia Living Biographies standard.

  • I'm not sure what you mean. If you found some grammatical errors but want other people to fix them, you might want to point out where they are. Even after the split this is a relatively long article. Also, what language in the article runs afoul of our policy on biographies of living persons? Protonk (talk) 17:36, 3 November 2010 (UTC)

AIS and same-sex marriage[edit]

Something that is not present in the article is the issue of the same-sex marriage problem. In some places, same-sex marriage is still illegal. If an AIS person with a female body type and xy male genetics marries an xy male there, are they breaking the law? I don't think this makes it a homosexual marriage, but a same-sex marriage. I'm not sure how much genetic testing is done before a marriage is approved, but surely AIS is one of the things required to be disclosed. Per the issues raised in this discussion.--Auric talk 16:56, 28 April 2013 (UTC)

Your question seems to be based on a misunderstanding of AIS. Women with CAIS are women in the social, legal, and every biological sense of the word except chromosomes, gonads, and uterus. No state or country requires that a man and a woman be checked to see if chromosomes, gonads, or internal organs are congruent before issuing a marriage license. Regardless of how much people may want to come up with contrived scenarios that might present legal difficulties, no legal jurisdiction in the world that I have ever heard of requires testing for fertility, or gender identity, or orientation, or anatomy if both parties represent themselves as man and woman, of legal age and unentangled with current marriages. The required medical testing in many jurisdictions is for STDs.
If you want to contrive some scenarios, there are none that are specific or peculiar only to AIS. If one of the partners has PAIS and has at various times in life been legally one sex and then the other, that history may present a barrier in some jurisdictions, but that is true for sex changes of any type. alteripse (talk) 17:53, 28 April 2013 (UTC)
Thanks for clarifying that. I wasn't sure if you could actually have a woman without the actual female organs / genetics.--Auric talk 19:16, 28 April 2013 (UTC)

Twins[edit]

How does AIS work with twins?

Identical and non?

Are they of equal sensitivity or is one more sensitive while the other is less? 71.173.20.108 (talk) 18:32, 15 February 2014 (UTC)

1976 article / recent edits[edit]

Hi Trankuility. Thanks for your recent edits to the AIS pages. I've made a few changes to the CAIS page that merit an explanation, so I've opened this section on the talk page.

Women with CAIS are described throughout the medical literature as such, because they are in fact women in every sense of the word except for genotype. This includes gender identity, sex, and phenotype. Your recent edit states that women with CAIS are born with a "female body shape." I've changed this back to state that they are born "phenotypically female." The difference is subtle, but important: some will see the former statement to mean that they are in fact males masquerading in a female looking body.

I've also restored the reference to the 1976 medical journal article, because it is a seminal article in this field; it has been cited 404 times according to PUBMED, including 54 times in the last 4 years.

Thanks again for your edits! Jonathan.Marcus (talk) 00:03, 11 October 2014 (UTC)

Thanks for the feedback. The phenotype change on the CAIS page was made by someone using an IP address, not me. I wouldn't have made that change myself at the time, but didn't revert it. You were right to do so, thanks.
In regard to the 1976 citation, it may be widely referenced, but the sense and meaning of the citation directly contradicts a 2013 statement by the Australasian Paediatric Endocrine Group. This is not a simple disagreement: the Group used exceptionally strong language in its condemnation of the implication that gonadectomies continue in cases of CAIS. It is my view that inclusion of the 1976 reference here is misleading, based on that data.
Also, can you identify where you moved the material on PAIS the interpolation of multiple rationales into decision making regarding gonadectomy? Thanks. Trankuility (talk) 08:08, 11 October 2014 (UTC)

The 1976 paper does make any claims that are inconsistent with the APEG paper. Specifically, it does not state that children born with CAIS should routinely undergo gonadectomy. The statistics that the 1976 paper supplies are that the incidence of germ cell malignancy in children with CAIS is very low, and that it increases with age, up to about 1 in 3 by 50 years of age. These statistics are consistent with modern estimates and is the very reasoning behind APEG's wait-and-see recommendation.

PAIS on the other hand, has dramatically different statistics regarding germ cell malignancy. The primary criteria here is whether or not the testes have descended. The APEG paper you cited recognizes this as well, as it places PAIS with cryptorchidism at the highest risk for cancer among all all the groups it considered, and recommends gonadectomy for this group.

Information pertaining to performing gonadectomy for non-medical reasons pertains to all individuals whose anatomy does not fit the gender binary, including all groups with AIS, and as such belongs at the most common branch. In my opinion, the most logical place for this information would be the intersex article. An abridged version with a link to the main article would be appropriate for the main AIS article.

It is also worthwhile to point out that information pertaining to mandatory sterilization is less relevant to AIS, as all but a very few people with AIS are already sterile. Jonathan.Marcus (talk) 00:12, 12 October 2014 (UTC)

Hmm. I did add a "see also" link to the intersex article, but you removed that link.
A link to the section of the intersex article that deals with the controversy surrounding genitoplasty for questionable reasons would be more helpful, and could be placed in the main AIS article with an abridged lead-in, as opposed to a link in the the "see also" section. Jonathan.Marcus (talk) 05:53, 12 October 2014 (UTC)
Issues in PAIS are not so clear cut. In a separate clinician submission to the Australian Senate inquiry, a group of medical experts sought to amend a previous statement that "In case of PAIS ... the decision regarding gonadectomy is largely determined by sex of rearing". See paragraphs 4.27-4.28, Senate of Australia (25 October 2013) Involuntary or coerced sterilisation of intersex people in Australia. This debate must be acknowledged in neutral articles on PAIS, and AIS more generally.
Issues in PAIS are definitely far from clear cut. However, statistics regarding germ cell malignancy in PAIS are definitive. The PAIS page has lots of good information regarding sex assignment and gender identity, as well as statistics regarding cancer rates that are consistent with APEG's recommendations and findings. Jonathan.Marcus (talk) 05:53, 12 October 2014 (UTC)
Additionally, APEG contend that CAIS is in a "low risk" category for tumor risk, and that is the basis for their striking language on the issue. This seems incompatible with the 1976 paper. Trankuility (talk) 02:14, 12 October 2014 (UTC)
I'm not sure that there is any disagreement between APEG's assertion that CAIS is low risk and the 1976 paper's statistic that the incidence of germ cell malignancy is approximately three percent. It seems to me that this supports the idea that cancer risk is low. As far as statistics for adults go, the statistic of 1 in 3 by age 50 is fairly consistent with other studies out there; that is why APEG asserts that the gonadal cancer risk in women with CAIS is higher than the general population, and careful monitoring is necessary. Jonathan.Marcus (talk) 05:53, 12 October 2014 (UTC)
The 1:3 statistic represents an intermediate to high tumor risk in the material presented to the Australian Senate, not the low risk in that evidence, accompanied by strong language and rebuttals of claims that gonadectomies continue. APEG did not note an increase in the tumor risk according to age in that evidence. Given the strength of the APEG argument, would it seem to you that APEG misled the Australian Senate? Trankuility (talk) 06:11, 12 October 2014 (UTC)
You might want to take a closer look at the APEG article you are citing; APEG makes no such claim that tumor risk does not increase with age in women with CAIS.
If you look at their references, you'll see that APEG is getting their germ cell tumor data from Looijenga LHJ et al. "Tumor risk in disorders of sex development (DSD)," which in turn is using data from Cools M, Drop SL, Wolffenbuttel KP, Oosterhuis JW, Looijenga LH: Germ cell tumors in the intersex gonad: old paths, new directions, moving frontiers." The Cools article explicitly states that the data is not valid for older CAIS patients. Furthermore, this paper actually cites the 1976 article you are trying to exclude.
So, no, I don't think APEG is misleading anyone. Instead, I think you may have accidentally misrepresented APEG. They have used strong language to condemn prophylactic gonadectomy in little girls with CAIS, and instead recommend a wait and see approach, with the caveat that careful and regular monitoring be performed. Jonathan.Marcus (talk) 09:21, 12 October 2014 (UTC)
That's certainly a view, but I don't think it substantiated, and I don't believe that mention of the 1976 paper is warranted. The Australian Senate analysis is quite detailed, it includes a walkthrough of those papers by Looijenga and others, a review of the 2007 paper by Looijenga and others (see footnote 45 on page 91), and it benefited from discussion directly with Warne, Cools, and others. The APEG submission was quoted directly in the Senate report, in paragraph 4.25, stating "The implication is that testes or ovaries are being removed from patients with diagnoses at low-risk of cancer, such as CAIS, however this is incorrect."
The inquiry report went on to say, "4.26 Subsequent submissions appear to indicate that there is some common ground,30 in recognising that cancer risk in some intersex people, especially those with CAIS or ovotesticular DSD, does not warrant prophylactic removal of testes.31 At the same time, OII, quoting other medical research,32 maintained that testes are still being removed from low-risk individuals (though presumably not by those specialists who do not support the practice, such as Warne and Hewitt, or the team at RCH Melbourne)". This position is supported by the current wording in the CAIS article, which at least now recognizes the controversy.
The Australian Senate then engaged in dialogue with Martine Cools, Arianne Dessens, Stenvert Drop, Jacqueline Hewitt and Gary Warne, see footnote 34 on page 88. The inquiry did, however, acknowledge that cancer risk issues were "oversimplified", before stating, inter alia, "4.37 Dr Cools and her Dutch team have sought to advance the scientific understanding and estimation of cancer risk in intersex individuals, and have done so with considerable success. " and "4.30 As cited above, the APEG submission stated that 'The recommendation of Warne and Hewitt, and in the current medical literature, is for preventative surgical removal only in the high-risk and intermediate-risk cancer group'. However the detail is more complex. In intermediate risk cases, the published literature has recommended gonadectomy only in some cases. For others, there is no definite recommendation.35"
On this basis, reliance on 1976 data to support a cancer risk of 1:3 in CAIS does not appear adequately supported by current material - and the context where the reference is included in the CAIS article is to provide an underpinning for prophylactic gonadectomy. The scientific understanding has advanced. CAIS is low risk. Trankuility (talk) 10:09, 12 October 2014 (UTC)
I took another look at the APEG paper, as well as the papers by Looijenga and Cools, and I still see no grounding to discredit the claim that cancer incidence increases with age. It looks to me that you and I are in agreement that cancer risk is around 2-3% in children with CAIS, but we disagree regarding the incidence of cancer in older women with CAIS. I have cited one paper that indicates the cancer risk is around 30% at 50 years of age. Here is another paper from 2014 that provides a similar statistic: http://humrep.oxfordjournals.org/content/early/2014/05/13/humrep.deu109.short. This study population is exclusively adult women with CAIS that did not undergo gonadectomy. Cancer incidence was 30%. I can provide you with additional references if you would like to see more evidence.
If you seek to discredit this, you will need to cite some evidence, as the APEG paper does not address this particular aspect of this debate. Jonathan.Marcus (talk) 22:03, 12 October 2014 (UTC)

I disagree, Jonathan. Adequate information is already in the public domain. You're acting as if medical journals exist in isolation as the sole source of knowledge, and this is a largely medical article. However, jurisprudence and legislatures also have an impact on policy and decision making in this area. The words stated by clinicians to a legislature, under the particular conditions that apply to those interactions, are a higher test.

If we look at the interactions between Organisation Intersex International Australia and the Australasian Paediatric Endocrine Group in their submissions to the Australian Senate, we see that Organisation Intersex International Australia made a submission that queried cancer risks in CAIS. They quoted Pleskacova et al, who in turn quoted Manuel. Here's that quote used by Organisation Intersex International Australia from Pleskacova et al:

"An early (1963) study (Morris et al) ... estimated a risk of 22% but this is most likely an overestimate, since many of the cases were referred primarily because of the malignancy. A 1992 Danish study reported tumours in 4 of 21 patients but a 1976 study had found no tumours in 23 patients of their own and only 7 tumours in 82 cases gleaned from the literature (8.5%). The risk of such tumours increases with age, the 1976 study (Manuel et al) suggesting an age-related risk of 3.6% at age 25 but approaching 33% at age 50. Two reports from one group (1981 and 1991) estimate the overall risk to be 6 to 9%.1."

It is on page 8 of the submission. Clearly Organisation Intersex International Australia gave the Australasian Paediatric Endocrine Group a chance to justify gonadectomies on women with CAIS on the basis of age-related increased risk of cancer, and comment on the wide disparity in estimated risk. However, in their formal submissions to the national Parliament, the Group chose not to do that, but instead to condemn (without naming it) the Organisation submission on this specific issue. Condemn out of hand, using the strongest language possible. They went further by unequivocally describing the tumor risk in CAIS as "low risk". If the Group had not done that, then your approach might be valid, however, the information presented to a national legislature does not support that approach.

The issue of age-related risk was not revisited in the report of the Parliamentary committee. However, the committee did show itself to be alive to issues of age-dependent treatment in other areas of the report, such as non-medically necessary genital surgeries which it argues should wait until the affected person can consent.

Organisation Intersex International Australia also quoted the following sentence from Pleskacova et al: "After the rational interpretation of available data, Cools et al. [2006a] rated the total occurrence at 12% and possibly at more than 30% if gonadectomy had not been performed."

This shows a degree of uncertainty about future tumor risk which is absent from the current article on CAIS. So does the earlier quote from Pleskacova et al which shows some doubt about a figure of 30% dating back to 1981 and 1991. The 2014 study you mention itself acknowledges selection bias. The article on CAIS is not neutral as a result, but is based on inadequate data pursuant to a specific medical objective. Trankuility (talk) 22:43, 12 October 2014 (UTC)

Nothing that APEG has stated contradicts the 1976 article. The 1976 article unambiguously states that cancer risk is low in prepubescent girls with CAIS. APEG concurs. The 1976 article explicitly recommends against routine gonadectomy in prepubescent girls with CAIS. APEG concurs. The 1976 article explicitly states that cancer risk increases with age, and estimates the incidence to be 1 in 3 by age 50. APEG says nothing about this.
Liu, et al. published a paper in 2014 that confirms the 1 in 3 cancer incidence in older women with CAIS that have not had a gonadectomy.
If you want to dispute the assertion that gonadal cancer risk increases with age in women with CAIS, you will need to produce evidence. As of now, you have not done so. Jonathan.Marcus (talk) 23:12, 12 October 2014 (UTC)
I am not disputing that the risk "may" increase with age. I am disputing the inclusion of a quotation that is unequivocal about a specified degree of risk, without qualification. Inclusion of such a figure is not neutral, does not fit the available data, and is not warranted. The APEG data do not exist in isolation. Trankuility (talk) 23:15, 12 October 2014 (UTC)
The current medical consensus is that risk increases with age. This is backed by many citations, including the 2006 review of the literature by Hughes. This consensus, like any medical consensus, is open to challenge. If you believe that I am incorrectly representing the consensus, or am misrepresenting my sources, you will need to produce some evidence, such as a citation to back up your opinion. Otherwise, it has no place in Wikipedia.
Do you have a citation that asserts that the risk does not increase with age, but instead stays constant, or perhaps decreases with age? Jonathan.Marcus (talk) 23:46, 12 October 2014 (UTC)
I feel like I'm not being listened to. I am not arguing that the risk of tumor may increase with age. I am arguing that the inclusion, unqualified, of a specific figure from 1976 is open to contention and should not be stated as an uncontested fact. Trankuility (talk) 23:49, 12 October 2014 (UTC)
I am sorry that you don't feel listened to. I hear that you are arguing that you would like to contest the inclusion of the statistics from the 1976 paper. However, you have not supplied me with any evidence that these statistic are being contested. I have broken down the arguments made by the 1976 paper, and have showed you that the APEG paper that you have hitherto used to ground your opinion does not contest these arguments. Furthermore, I have supplied you with supporting evidence that these statistics are accurate in the form of the 2014 paper from Liu et al that corroborates the arguments made in the 1976 paper.
If you want to show that these statistics are contested, you will need to produce evidence. Your opinion is well noted, but needs to be backed up. Jonathan.Marcus (talk) 00:01, 13 October 2014 (UTC)
So, it turns out that the paper by Manuel et al has not been digitized, and it's not easy to get hold of, but the contents are very interesting: "incidence of tumors in relation to age and clinical classification was analyzed by computer. The results were plotted for each group". In relation to Group IV, "testicular feminization", the article says, "There were 23 cases in our files and none of them had a tumor. There were 82 cases available from the literature, making a total of 105 cases. There were seven malignant tumors amongst them.... The data were computerized and the results were plotted with age on the abscissa and the expectancy of tumors on the ordinate. The sigmoid curves were applied to data points... The expectancy of tumors ... reaches 33 per cent at the age of 50. The curve here is shifted to the right as compared to the other categories of patients" It goes on to say that gonads could be retained until age 30, and this is consistent with "Morris and Mahesh who, in their review, found one malignant tumor in a teenage patient, two in those in their twenties, and 11 in 50 reported cases of 30 years or older. They thoughts that this 22 per cent incidence of malignancy was probably high, because the presence of the tumor was the indication for operation in many instances. Dewhurst, on the other hand, found no malignancies in 82 patients with this syndrome... From his personal experience and from a review of the literature, he suspected that the risk of tumor was approximately 5 per cent.
The original 1976 citation therefore show a range of possible risks. The source data for the "computerized" analysis shows 7 tumor cases - including one case "pelvic cancer", and comparisons to a lower risk assessment in cases where selection bias is evident. Overall, it's not clear that the quality of the analysis - including the no doubt novel computerized analysis and the small sample size - would match modern statistical practices.
I have already mentioned risk assessments by Pleskacova et al and Cools et al. I don't believe that inclusion of the data in Manuel is warranted. Trankuility (talk) 13:53, 30 October 2014 (UTC)
Your opinion regarding the interpretation of the paper is noted, but as I'm sure you know, original research is not allowed on Wikipedia. Jonathan.Marcus (talk) 11:15, 1 November 2014 (UTC)
Don't be patronising. This discussion is taking place on a talk page for that very reason. Your interpretation is also an opinion. Trankuility (talk) 16:41, 1 November 2014 (UTC)
Here is the sentence in the article that you'd like to remove: The risk of malignant germ cell tumors in women with CAIS increases with age and has been estimated to be 3.6% at 25 years and 33% at 50 years. The estimate given, approximately 1:3 by age 50, is frequently attributed to the 1976 paper in the medical literature, as you well know. Clearly this is not my interpretation. Reinterpreting the 1976 paper yourself does not negate this.
If you want to remove this estimate that the incidence of gonadal cancer is approximately 1:3 by age 50, then you will need to support your opinion with a citation that directly addresses this. You have not done so.
I'm not patronizing you, Trankuility. And insulting me is not going to help anything. Removing this perfectly valid estimate without just cause only serves to deny women with CAIS the opportunity to make an educated decision about whether or not they should undergo gonadectomy as adults. Justifying this requires more than just your opinion, regardless of how strongly you feel about it. Jonathan.Marcus (talk) 23:55, 1 November 2014 (UTC)
Part of what's contentious about this statistic, is that it's used to justify gonadectomy on children, when 1) they're at minimal risk and, 2) they cannot make an informed choice for themselves - Alison 00:20, 2 November 2014 (UTC)
If that's the case, then we should expand on this section to make it more explicit that performing gonadectomy on little girls with CAIS is no longer practiced, since they are considered low risk. I do think that women with CAIS should be aware that the odds change as they get older. I also think that we should be able to provide this information without misleading the reader into thinking that little girls should be gonadectomized.
Perhaps this would be best accomplished by adding some text about how many women with CAIS are waiting until after puberty before they remove their testes, how some women choose not to remove them at all, and the reasons why they choose to do so. I just don't think we should be hiding the statistics regarding their chances of getting cancer when they make this choice. Jonathan.Marcus (talk) 08:22, 2 November 2014 (UTC)