Talk:Androgen insensitivity syndrome

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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)

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)

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)

Merger proposal (withdrawn)[edit]

I propose that Complete androgen insensitivity syndrome (CAIS) be merged into Androgen insensitivity syndrome (AIS), with a redirect from CAIS to AIS. The scope of two is already the same, if you look at the current content. — soupvector (talk) 14:37, 2 April 2016 (UTC)

  • Oppose – Subarticles for CAIS, PAIS, and MAIS were split out of this article in 2010. The reasons were discussed above. In short, several readers that are affected by these syndromes objected to being lumped in one big class and also objected to some of graphics that were included. Splitting the articles help minimize these issues. Boghog (talk) 15:12, 2 April 2016 (UTC)
thanks for the pointer. Based on content, the "careful split" that was proposed has not occurred - the AIS and CAIS articles overlap extensively. I won't object to a WP:SNOW closure if that's felt to be appropriate and expedient, but I don't think the current "solution" is working. — soupvector (talk) 20:01, 2 April 2016 (UTC)
Thanks for your reply. I agree that there is too much overlap between the articles and I will try to reduce it. Boghog (talk) 06:04, 3 April 2016 (UTC)
  • oppose per Boghog's rationale (even though one can see the benefit of such a merger, according to the issues raised above it seems best left as is...IMO)--Ozzie10aaaa (talk) 15:20, 2 April 2016 (UTC)
  • oppose for the same reasons. Additionally for the impact on the material on PAIS. CAIS and PAIS have substantially different physical realities and treatment norms. Trankuility (talk) 23:08, 2 April 2016 (UTC)

Proposal withdrawn - thanks to participants for helping me understand where the consensus lies. — soupvector (talk) 04:48, 3 April 2016 (UTC)

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