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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)
--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)
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)
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)
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
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.
"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 ( talk • contribs) 15:41, 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)
____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 ( talk • contribs) 20:29, 2 November 2010 (UTC)
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)
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)
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.
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)
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)
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)
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)
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)
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)
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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I noticed y’all added these in to this article.
Chromosomal anomalies: Klinefelter syndrome (47,XXY karyotype) Turner syndrome (45,XO karyotype) Mixed gonadal dysgenesis (45,XO/46,XY karyotype) Tetragametic chimerism (46,XX/46,XY karyotype) Androgen biosynthetic dysfunction in 46,XY individuals: Luteinizing hormone (LH) receptor mutations Smith–Lemli–Opitz syndrome (associated with intellectual disability) Lipoid congenital adrenal hyperplasia 3β-hydroxysteroid dehydrogenase 2 deficiency 17α-hydroxylase deficiency 17,20 lyase deficiency 17β-hydroxysteroid dehydrogenase deficiency 5α-reductase deficiency Androgen excess in 46,XX individuals: 21-hydroxylase deficiency 3β-hydroxysteroid dehydrogenase 2 deficiency Cytochrome P450 oxidoreductase deficiency (disorder in mother causes 46,XX fetal virilization) 11β-hydroxylase deficiency Aromatase deficiency Glucocorticoid receptor mutations Maternal virilizing tumor (e.g. luteoma) Increased androgen exposure in utero, not otherwise specified (e.g. androgenic drugs) Developmental Mayer–Rokitansky–Küster–Hauser syndrome (46,XX karyotype) Swyer syndrome (46,XY karyotype) XX gonadal dysgenesis (46,XX karyotype) Leydig cell agenesis or hypoplasia, not otherwise specified (46,XY karyotype) Absent (vanishing) testes syndrome Ovotesticular DSD Testicular DSD (i.e. 46,XX sex reversal) Teratogenic causes (e.g. estrogens, antiestrogens) Other causes: Frasier syndrome (associated with progressive glomerulopathy) Denys–Drash syndrome (associated with nephropathy and Wilms tumor) WAGR syndrome (associated with Wilms tumor and aniridia) McKusick–Kaufman syndrome (associated with postaxial polydactyly) Robinow syndrome (associated with dwarfism) Aarskog–Scott syndrome (associated with facial anomalies) Hand-foot-genital syndrome (associated with limb malformations) Popliteal pterygium syndrome (associated with extensive webbing behind knees) Kallmann syndrome (often associated with anosmia) Hypospadias not otherwise specified Cryptorchidism not otherwise specified vaginal atresia not otherwise specified
Adding theses is a little unrelated to the topic. CycoMa ( talk) 18:10, 26 December 2020 (UTC)
Sorry never mind I misread it. CycoMa ( talk) 18:54, 26 December 2020 (UTC)
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Reporting errors |
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)
--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)
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)
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)
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
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.
"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 ( talk • contribs) 15:41, 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)
____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 ( talk • contribs) 20:29, 2 November 2010 (UTC)
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)
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)
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.
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)
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)
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)
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)
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)
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)
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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I noticed y’all added these in to this article.
Chromosomal anomalies: Klinefelter syndrome (47,XXY karyotype) Turner syndrome (45,XO karyotype) Mixed gonadal dysgenesis (45,XO/46,XY karyotype) Tetragametic chimerism (46,XX/46,XY karyotype) Androgen biosynthetic dysfunction in 46,XY individuals: Luteinizing hormone (LH) receptor mutations Smith–Lemli–Opitz syndrome (associated with intellectual disability) Lipoid congenital adrenal hyperplasia 3β-hydroxysteroid dehydrogenase 2 deficiency 17α-hydroxylase deficiency 17,20 lyase deficiency 17β-hydroxysteroid dehydrogenase deficiency 5α-reductase deficiency Androgen excess in 46,XX individuals: 21-hydroxylase deficiency 3β-hydroxysteroid dehydrogenase 2 deficiency Cytochrome P450 oxidoreductase deficiency (disorder in mother causes 46,XX fetal virilization) 11β-hydroxylase deficiency Aromatase deficiency Glucocorticoid receptor mutations Maternal virilizing tumor (e.g. luteoma) Increased androgen exposure in utero, not otherwise specified (e.g. androgenic drugs) Developmental Mayer–Rokitansky–Küster–Hauser syndrome (46,XX karyotype) Swyer syndrome (46,XY karyotype) XX gonadal dysgenesis (46,XX karyotype) Leydig cell agenesis or hypoplasia, not otherwise specified (46,XY karyotype) Absent (vanishing) testes syndrome Ovotesticular DSD Testicular DSD (i.e. 46,XX sex reversal) Teratogenic causes (e.g. estrogens, antiestrogens) Other causes: Frasier syndrome (associated with progressive glomerulopathy) Denys–Drash syndrome (associated with nephropathy and Wilms tumor) WAGR syndrome (associated with Wilms tumor and aniridia) McKusick–Kaufman syndrome (associated with postaxial polydactyly) Robinow syndrome (associated with dwarfism) Aarskog–Scott syndrome (associated with facial anomalies) Hand-foot-genital syndrome (associated with limb malformations) Popliteal pterygium syndrome (associated with extensive webbing behind knees) Kallmann syndrome (often associated with anosmia) Hypospadias not otherwise specified Cryptorchidism not otherwise specified vaginal atresia not otherwise specified
Adding theses is a little unrelated to the topic. CycoMa ( talk) 18:10, 26 December 2020 (UTC)
Sorry never mind I misread it. CycoMa ( talk) 18:54, 26 December 2020 (UTC)