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[–]ColoredTwiceIntersex female, medical malpractice victim, lesbian 11 insightful - 1 fun11 insightful - 0 fun12 insightful - 1 fun -  (12 children)

No, it means it is very hard (or unethical in case of CAIS) to determine and double down on it.

It is still possible, but there too few people to test and research.

For example - in last 100 years there were only 4 recorded cases of XXY or XXXY without SRY gene. And only one case of chromosomal chimerism which ended with person being male.

So even if it was impossible to determine sex of those 4, that would mean nothing - too rarelly happens.

Some humans are born with one leg because of chromosomal errors - this does not mean that humans are not bipedal. Right?

[–]IWoreWhat 2 insightful - 4 fun2 insightful - 3 fun3 insightful - 4 fun -  (11 children)

Why is it "unethical" to determine the sex of CAIS people? How is it as unethical as or more unethical than determining the sex of regular people when they look at their genitalia?

Are CAIS male or female? If someone happens to want to date a CAIS individual, they should know if they are with a male or female, or at least might be curious to know. And I think it is unethical for them to be told "we can't test if you're dating a male or female because it's unethical". Which sex are they and how do we know?

[–]MarkTwainiac 11 insightful - 1 fun11 insightful - 0 fun12 insightful - 1 fun -  (10 children)

Persons with CAIS have male sex chromosomes but because they are completely insensitive to androgens develop a female phenotype and are typically raised as girls and regarded as women. I disagree that it's "unethical" to determine the sex of individuals with CAIS. They need health care just like everyone else does, which means diagnosing their condition and providing them with counseling and sometimes medical interventions too. Most people with CAIS learn of their condition in their teens when they reach 15 or 16 without ever having a period. Amenorrhea at that age is a serious issue that requires medical investigation.

Since many sex differences are the result of chromosomal sex, not gonadal or hormonal sex, and exist at the cellular level and affect various organs and body systems, the fact that persons with CAIS are XY needs to be taken into account when assessing their health and their health risks, and determining which treatments are most appropriate for them.

For example, there are considerable differences between the two sexes in such areas as kidney function, how the respiratory system works, and in immune function and overall level of immunity. Whilst XX people get more kidney disease than XY people do, XY people are more likely to die of kidney disease and at an earlier age. Certain diseases involving the lungs have very different trajectories, and life expectancies, in the two sexes. XX people have more robust immune function than XY people, which means we have a much higher rate of auto-immune conditions - and we have much stronger reactions to vaccinations and suffer more adverse reactions. Similarly, the risk of dying or needing ICU care due to COVID-19 is far greater for XY people than XX people, and the sex differences grow with age - to the point where a in the age group 85+, patients with only one X chromosome are 3.17 times more likely to die of COVID than patients with two Xes.

All that said, I think that persons with CAIS have every right to their privacy and to keep their condition between themselves and their family and HCPS, the only exceptions being in competitive sport where they might have an advantage - and of course in intimate relationships. When they date, the issue of their sex and medical condition is certainly relevant, especially as most people in the population want to have biological children but people with CAIS cannot. As with any other kind of condition that causes infertility, thorny issues of when during dating the fact of infertility should be divulged - and in the era of dating apps, these issues might well be thornier today than ever in the past.

But how to negotiate matters around disclosure during dathing is for individuals with CAIS to decide, based on their own ethics and with help from family, counselors, clergy to advise them. I don't think any of them should be seen as under any obligation to make their highly unusual medical condition part of their public profiles on dating sites. The question of

Which sex are they and how do we know?

Seems germane only to someone they personally know & might want to pursue an intimate relationship with. And for sports governing bodies in certain circumstances. But I think the rest of the world will get on fine without asking those questions or knowing the answers of individuals who have this vanishingly rare medical condition.

[–]IWoreWhat 3 insightful - 5 fun3 insightful - 4 fun4 insightful - 5 fun -  (9 children)

They don't have to say they have CAIS. But they will have to say their sex. if I meet a CAIS individual that tells me they are male eventhough CAIS are female, then I will feel deceived and lied to.

And if they say they are female eventhough CAIS are male, the same thing happens. Everyone has a right not to be deceived and lied to like this. I don't want to use false language. If CAIS are female, I will use "woman", and "she/her" when talking about them. If they are male, I will use "man", and "he/him". It is like if I meet a "trans woman" who "passes". If he doesn't tell me he's a man, then he's withholding information from me, and making me use false language such as "she/her". This would make me feel uncomfortable just because they don't want to feel uncomfortable.

So are CAIS male or female? Are they male because they have male chromosomes? Or are they female because they have a female phenotype? Which one would be true? Nobody has answered this question so far.

[–]MarkTwainiac 6 insightful - 1 fun6 insightful - 0 fun7 insightful - 1 fun -  (2 children)

They are people who were born with an exceedingly rare medical condition, a condition they did not ask for and which they played no part in bringing about. They are not out to deceive or lie to you or anyone else. They have nothing in common with trans-identified people - or with other individuals who, for whatever reason, set out with the conscious, purposeful intent of deceiving, duping, conning, hoodwinking, swindling and/or misleading. People with CAIS and other rare medical conditions are not The Big Bad Wolf, so stop trying to make it seem as if they are.

Tough noogies if such individuals not revealing the fact of their very rare genetic condition and the conflict between their sex chromosomes and phenotype to you upon first meeting

would make me feel uncomfortable just because they don't want to feel uncomfortable.

They aren't "withholding information" about their inherited medical conditions from you "because they don't want to feel uncomfortable." It's because prejudice, abuse and discrimination against people with genetic disorders is very real and quite common - and they don't want to make themselves vulnerable to such treatment. Which is why in the USA federal legislation called the Genetic Information Nondiscrimination Act of 2008 (GINA) has been in effect since November 2009, and why there are many state laws either on the books or under consideration to expand the privacy protections afforded by GINA.

https://www.natlawreview.com/article/new-state-genetic-privacy-law-directed-consumer-genetic-tests

So are CAIS male or female? Are they male because they have male chromosomes? Or are they female because they have a female phenotype? Which one would be true? Nobody has answered this question so far.

There are many CAIS and AIS support groups and forums online. I suggest you head over to all of them and pose your questions there. Make sure to tell 'em that you won't take NOYB as an answer coz even though you don't know them and never will meet any of them, your position is

They don't have to say they have CAIS. But they will have to say their sex.

To you a total stranger on the internet because in your view

Everyone has a right not to be deceived and lied to

And by "everyone" you really mean you, and that you take it as a given that if you're really, really curious to know something about others, then none them have any right whatsoever not to divulge to you the information about themselves that you desire to know when you stamp your foot and demand they come clean and cough it up.

Please do come back and let us know how they respond.

[–]IWoreWhat 3 insightful - 5 fun3 insightful - 4 fun4 insightful - 5 fun -  (1 child)

You haven't answered my previous questions: Are CAIS male or female? Are they male because they have male chromosomes? Or are they female because they have a female phenotype? Which one would be true?

the conflict between their sex chromosomes and phenotype

Is sex determined by chromosomes or phenotype? Intersex people with CAIS are chromosomically male and phenotypically female. Are they male and female at the same time then? If they are just one of the two sexes, then should we go with chromosomes or phenotype?

Depending on the answer, I think your "morality" differs from mine. To you, people with disabilities never do anything bad. If someone with a disability says they are able-bodied, it's automatically not a lie and it's a good thing to do.

But I think it's a lie and it's deception. If sex is determined by phenotype, then CAIS are female, and not male no matter what their chromosomes are, and if they tell me they are male, that would be a lie.

If sex is determined by chromosomes, then CAIS are male, and not female, and if they tell me they are female, that would be a lie.

And by "everyone" you really mean you, and that you take it as a given that if you're really, really curious to know something about others, then none them have any right whatsoever not to divulge to you the information about themselves that you desire to know when you stamp your foot and demand they come clean and cough it up.

They want to feel comfortable right? Why should I feel uncomfortable when they say they are something they aren't (a lie) just because they feel comfortable that way?

[–]MarkTwainiac 6 insightful - 1 fun6 insightful - 0 fun7 insightful - 1 fun -  (0 children)

Why are you still asking me? Go ask on sites for people with CAIS. They're not hard to find.

Depending on the answer, I think your "morality" differs from mine. To you, people with disabilities never do anything bad.

I never said anything to lead anyone to think I believe "people with disabilities never do anything bad." What tosh.

Yes, we definitely do have a different view of morality. You seem to think you are the only person whose rights matter. You believe your right to satisfy your curiosity about other people's inherited, innate medical conditions by forcing them them to divulge whenever you, a total stranger, rock up and demand they do so will always trump the right of people with those conditions to tell you to get lost, that they will be the ones to decide with whom to share said info - and you as a total stranger have some nerve to think you have the right to order other people around.

You sound like those people who go up to pregnant women encountered in public who are total strangers, put their hands on the women's bellies and ask, What are you having? A boy or a girl? And if the poor women are so flummoxed that they actually answer before they have enough time to register how appallingly inappropriate the question is, then proceed to ask if the moms-to-be are going to breastfeed, plan to give birth vaginally or by C section, whether they want an unmedicated "natural" birth or are open to using drugs, will allow an episiotomy, plan to use a mirror to watch the baby come out, intend to circumcise the child if it's a boy, will use cloth or disposal diapers, and whether they've considered Montessori or Waldorf schools or plan to homeschool... LOL.

[–]HeimdeklediROAR 1 insightful - 5 fun1 insightful - 4 fun2 insightful - 5 fun -  (5 children)

I believe that generally individuals with CAIS are considered by the medical establishment to male if they’re being assigned a binary sex.

[–]MarkTwainiac 7 insightful - 1 fun7 insightful - 0 fun8 insightful - 1 fun -  (4 children)

I dunno what you mean by "considered by the medical establishment to be male if they're being assigned a binary sex." Most individuals with CAIS are raised as though they were female, but in medical records/charts and when seen and treated in health care settings it's important for clinicians to know and keep in mind the full picture in order to provide the patients with proper care and support. Also, age at diagnosis plays a role. Lots of cases of CAIS traditionally weren't "caught" until adolescence, but nowadays more and more cases are diagnosed at in utero, shortly after birth or in early life.

https://www.issm.info/sexual-health-qa/what-is-complete-androgen-insensitivity-syndrome-cais/

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60071-3/fulltext

BTW, I've read of at least one medical case report of someone with CAIS who was raised as a girl but adopted a male "gender identity" in adolescence and became a transman, including getting a phalloplasty.

[–]HeimdeklediROAR 1 insightful - 7 fun1 insightful - 6 fun2 insightful - 7 fun -  (3 children)

Yes I’m aware sex is a spectrum I was just giving you the usual “binary” answer to the question

[–]MarkTwainiac 7 insightful - 1 fun7 insightful - 0 fun8 insightful - 1 fun -  (2 children)

CAIS actually gives more credence to the fact that sex is binary than a spectrum. Also, I thought your view is that sex is a matrix. Or am confusing you with someone else? If I am, apologies.

[–]BiologyIsReal 7 insightful - 1 fun7 insightful - 0 fun8 insightful - 1 fun -  (0 children)

Heimdekledi was who talked about the sex matrix, and Heim have yet to tell us how this matix looks like.

[–]HeimdeklediROAR 1 insightful - 5 fun1 insightful - 4 fun2 insightful - 5 fun -  (0 children)

Matrix would be the proper term as there would be more than one axis of sex traits, but I commonly use the term spectrum as I feel it’s a more commonly understood concept than a matrix