Accurately assessing sex-related characteristics saves lives. Can we make it fair to all humans, women, men, trans and inter folks? A nerdy idea.
Sex-related characteristics are medically relevant; accurately assessing them saves lives. But neither assigned sex nor gender identity alone properly capture them. Is anyone else interested in designing a characteristic string instead, so all humans, esp. all women and gender diverse folks, get proper medical care?
This idea started yesterday, when I had severe abdominal pain, and started googling. Eventually, I reached sites that listed various potential conditions. Some occur in all people (e.g., stomach ulcers), albeit often not with the same presentation and frequency; others have very specific sex-based requirements (e.g. overian cyst, or testicular torsion). Some webpages introduced ovary-related things as “In women, it can also be…” Well, I thought—I highly doubt my trans girlfriend has an ovarian cyst. But we are used to getting medical advice that does not fit for her, aren’t we? (In retrospect, why did I think that was okay, just because it was so common?) Other sites, apparently wanting to prevent this, stated “we use female in this text to refer to people assigned female at birth”. I was happy that they had thought about this and cared, but… frankly, that does not work either. I was assigned female at birth; that means I was born, and a doctor visually inspected me, and declared “female”. And yet I most certainly do not have a fallopian tube pregnancy now, because I had my tubes surgerically removed, which also sterilised me. I’m as likely as the dude next door to have a fallopian tube pregnancy now. An inter person assigned female at birth may also be dead certain they do not have an ectopian pregnancy, because their visual inspection at birth actually misjudged their genes and organs quite a bit.
I wondered what I would have liked the website writers to use instead. And the more I thought about it, I thought… this is not an issue of politically correct language. Not a matter of saying the exact same thing, but in a way that makes people feel better. Like, you don’t fix the problem by replacing “woman” with “cis woman” or “assigned female at birth”. All this language exposed was what was a genuine problem in the first place, that the advice was unsuitable for a bunch of people, and that those people weren’t able to get the right advice, and exchanging one piece of vague language for another does not fix that. This is a serious problem that gets people killed.
The state of the medical art used to be that they described the way things manifested in the average cis man, and then if you were a cis woman, they said whatever it was you were complaining about, it was probably your period and/or hysteria. That was bad, and got a lot of people killed.
It killed people on the one hand, because people of all sexes can get a large number of medical problems in common, and having your appendicitis blamed on your uterus is fatal. But they also did because ovaries, a uterus, breasts and a natural estrogen cycle come with all sorts of unique medical problems (say, breast cancer, which requires frequent screening, or post-partum depression, which can lead to suicide, especially when noone involved understands what the fuck is happening). (The same is true vice versa. A person very, very dear to me got testicular cancer at age 15, and I so, so wish we had known what to look out for, before the cancer had destroyed them, because there were signs.) Beyond these problems that seem straightforward results of secondary sex characteristics, it turned out that there were other marked differences. E.g. when people lumped in the “men” group have heart attacks, this presents in a particular fashion, and this fashion is taught in medical school and depicted in movies. It turned out that in the “women” group, it tended to present differently, in all sorts of ways. Unfortunately, this led to their heart attacks not being recognised as well, and a lack of medical care in that scenario tends to be fatal. Women have just as many heart attacks as men, but they are likelier to die from them. Your characteristic man clutches his heart in sudden chest pain. Your characteristic woman may instead have jaw pain moving down her back and arm, and a suddenly overwhelming emotional sense that she is about to die. Ignoring her accurate assessment because she isn’t clutching her heart would be very bad. Not would. It is. They die. We have begun to understand how bad this is, and to teach people to look for more diverse heart attack manifestations, but it still is a problem in so many ways.
These issues are pervasive. ADHD and autism are underdiagnosed in women, because they do not look like the nerdy or hyper stereotype people expect. Depression is underdiagnosed in men, because noone expects the men to smile in the first place, so their awful suffering can go unnoticed. Both groups lack the help they need, can’t make sense of their pain, are blamed for it, blame themselves for it, don’t get the right diagnosis, don’t get the medication and therapy that would help. Recognising these differences has the potential to help a lot of people who really fucking need it.
I said “women” (and men) just now. Did I mean cis women (men)? Or all women (men)? Which raises the interesting question: How does heart disease, or being autistic, or being depressed, manifest in trans women, and trans men? Like their sex assigned at birth? Like their lived gender? Or in a uniquely different way due to the unusual combination between the two here? How about an intersex person? I have no idea. I wouldn’t know where to look. I suspect that noone knows. I suspect this because when I look for medical trials and observations and text book pages, I find trials for men. Sometimes trials for women. But they always mean cis for both, I think. If you are intersex, if you are trans, you are not accounted for in testing, you are screened out before the experiment begins. Not even when the medical interventions are primarily used by trans or inter people.
And this information is also missing in the hospital. Even if the hospital knew how trans people responded to a thing, they do not have their status marked down. The best a trans person can hope for is to have a gender marker that produces dysphoria and leads to them not being recognised in the emergency room being changed into one that does not, so at least, they are not acutely mentally distressed on top of being ill, and the doctor looking for the sick girl who just collapsed will actually find her rather than carrying on walking looking for the boy he was sent to assist. But neither marker will tell the doctor their actual internal organs. Let this sink in. A trans person can be in a hospital, passed out, and the responders can have their purse in hand, telling them all sorts of useless information, and they can start fighting over whether to call her a woman or not, and do these weird stand-ins where they are like “but medically, she is really a man, right?” and no, not right, she is running on estrogen, she does have breasts, she might have had her testes surgically removed and she might not have, she might be intersex in the first place, who knows, the doctors literally do not know which internal organs their patient has. My mum is a gynacologist. She once spent several distressed minutes during an ultrasound trying to understand where her patients uterus had gotten to. The patient was trans, and thought her surgical alteration would be obvious to a doctor who deals with women’s genitals all day. It was not. But accordingly, if that trans woman had started bleeding from her vagina in the hospital, no one would have batted an eye, even though that ought to be seriously fucking worrying. (A post-menopausal cis woman whose uterus has shut down beginning to bleed again ought to also be very fucking worrying. But worrying in a different way. It usually means uterine cancer.)
And accordingly, whether my girlfriend gets an invite for breast cancer screening (which she ought to, as she did grow breasts and is at higher risk) or a testicular cancer screening (which she ought to, cause she never had those removed) is a matter of pure luck, and she will very likely only get one of these. Though I bet you if she gets the breast cancer screen invite, they will also invite her for a pap smear for non-existent uterus cancer. This random screening would be funny, except we know that cancer screening saves lives.
Going back to my stomach pain website… one of them didn’t do all this “for women” or “for those assigned female” bullshit. It went “the following conditions would be relevant for those who have ovaries”, and then they were actually overian conditions, and I thought, yep, that is the relevant question here, yay! All ovary-wielders step up, please. But often, we don’t even know the relevant question yet. E.g., stomach ulcers seem to be more common in men. We could imagine various reasons why. A diet higher in meat, perhaps; or particular kinds of stress, as men are still likelier to work as managers or in the military, incl. typically taking over the most dangerous work with huge responsibility. But in that case, we should worry about meat eaters and people who work in super scary jobs, not men (maybe dump S. boulardii in all the yoghurt in the military canteen and print warnings on the bacon, so you also get the female soldiers who love bacon). But maybe it is actually an issue for men in particular. Because maybe xy chromosomes lead to differently structured stomachs, or testosterone and H. pylori get on well, who knows. But why don’t we know? We ought to know. The distinctions between sexes that I am coming back to, while they go beyond “assigned female or male”, aren’t actually that many—genes, hormones, sex organs, lived gender.
I’m pretty sure you could list all the relevant questions on a two page questionaire. And most of the answers could be coded in quite a straightforward manner. You could end up with a single line string, which any doctor could learn to read in 20 min, and would then be able to interpret at a glance for life, and which would be in your medical file. You’d have it yourself, for when you figure out which diseases you might have. You’d have it on a medical licence you carry on you in case you hit the emergency room.
If you are in a medical trial, they would record this string, not m and f, anonymously. And we’d suddenly get much better data on what makes people sick, which of these factors actually correlates with what. E.g. do trans women acquire women’s heart attack manifestation when they take estrogen? Do they never acquire it, because it is genetic only? Do they have it independently of HRT, because it is a learned gender role, or a matter of the brain wiring causing them to be trans in the first place? Or does their unique makeup lead to a different reaction?
It would otherwise be your private, personal medical information, which no boss or other person has a right to. (This bit is bloody important.) Maybe even worth keeping offline only, what with the US becoming so crazy on invading women’s privacy, because this is very, very private and vulnerable information, for you and the doctors and researchers you trust only, noone else’s business. Not for your state ID, but maybe for your healthcare card, or organ donor card, or in case of emergency card. Maybe something you know by heart, like a phone number, and that your life partner knows.
Questionaire ideas: For any answers that are guessed, and not actually tested, I’d propose adding a star after the answer in the code later, highlighting that it is worth double checking if things get weird. (The recent experiences in the olympics, when people thought to do chromosome testing, hopefully highlight that your belief that you are xx or xy does not actually mean all that much; I’d trust it once you have had a child, and give it reasonable confidence if your appearance, feelings and your bodies’ behaviour have been consistently and archetypically binary throughout adulthood. Otherwise, not. Walk into a fertility clinic, and people with testosterone resistance or Klinefelder or or or are everywhere suddenly. Walk into a gyno office, and the amount of people who need medication for unusual hormones, or hair in places where they do not want it, or periods that come at the wrong time or not at all, are all over the place. Your surprise extra organs can unfortunately get cancer before you realise that they exist.) As there are also some answers where people absolutely won’t know for sure (e.g. hormone levels) but can make a reasonable guess on range, there also needs to be default option one can set (and warn with the star of) until they are checked, like “presumably typical natural testosterone/estrogen during middle age”.
But I think I would record: (And update every few years, more often when something specific has changed)
Sample questionaire
Felt gender identity (Giving 0-5 on a scale for woman and 0-5 on a scale for men—so not a sliding scale in between, but one where you can max or min either) (I thought about having this at the end, as least medically relevant, but I think that would prime the patient to understand their identity through their body as they fill it out last, and it will also lead to the doctor forming a gender assessment that might be wrong and will lead to persistent misgendering later, so quick start with that seems sensible)
Chromosomes: XX, XY, but also the other combinations, like XXY
Sex Hormones: None (child, vs postmenopausal woman not on HRT, distinguish), Natural high testosterone, natural high estrogen, natural mix (potentially sliding scale, again—e.g. I think things like Hirsutism should be captured here; our cut-off for calling someone inter is arbitrarily strict, while real hormones occur more on a sliding scale, with overlap between the female and male range), partially synthetic (birth control pill), fully synthetic (HRT in trans people or post menopause), multiple options possible
Hormone sensitivitiy: None known, mild (PMS), severe (PMDD, postpartum depression)
Grown breasts: No, Yes, Partial (teenager, men’s breasts? Can gynecomastia lead to breast cancer? Do we know?), removed. Possibly also recording implants?
Uterus: Absent, partially removed (burned out, or without opening), present and active (on period), present and inactive (teenager, post-menopausal, shut down via implant, temporarily inactive due to disease), and whether the person has given birth before, as this changes risk factors
Ovaries: Absent from the start, removed, partially removed (sterilisation, ectopian pregnancy), intact
Testes; absent, present, one removed, both removed; possibly whether the person has sired a child (as this is very high confirmation for xy), possibly penis (if that is a significant medical factor for a lot of stuff, I honestly do not know)
Pronoun (so the doctor, looking up from all this info about you, will also know to correctly gender you, yay)
Sample string You’d end up with something looking maybe like this: (for a fictional trans woman) W5-M0 - XY* - E:4(FS) T:1(N) - HS:U—B:Y—U:N—O:N—T:Y—she/her
This says: She feels completely (5) like a woman, not at all (0) like a man; her chromosomes are presumed XY, but have not been tested; she is on moderately high estrogen (4), which is fully synthetic, while her testosterone has been pushed down into the female range, (1) no hormonal sensitivities known; breasts yes, uterus no, ovaries no, testes yes pronouns she/her
One could make it shorter, by keeping a particular order forever, but the order might change as we learn stuff, and I think comprehensible is likely more important, so it might even make sense to have more spacing and longer abbreviations. Maybe there could be a super short variant people start using when it becomes more well known. I find “yes” vs “no” more comprehensible than things like “present, always absent, removed”, but those distinctions likely matter. Like, your anatomy is different when you have never had an organ vs had it removed. So one would have to play around a bit to find something that is easy to read but has all the important stuff, so a doctor sees, at a glance, everything they need.
Hence, we would gain the clear language we need to give appropriate medical care, that cis women have fought so hard for, without throwing their trans sisters and trans brothers under the bus (or rather, leaving them there, in the position cis women used to be in, where you don’t really medically exist, and are expected to figure out the medical implications for yourself). If a doctor asks what you really are, you’d give them this string, and it would accurately capture your gender identity and how you want to be addressed, who you are, while also capturing which bloody organs and hormones you have.
We could record this string when checking our patient for various cancers, and improve screening as we record frequencies.
We could record it while testings meds for trans people on trans people and give the trans people some clear and informative papers to read on the issues so crucial to them, and for which they are vainly scouring the net.
We could get proper care for inter people, who are being treated like they are just sick cis men, or sick cis women, or left stranded, each an individual, alone, without references to anyone else whose suffering they could have learned from so as not to repeat it.
We could get better medical care for cis women, because we could learn which aspect of their bodies causes particular diseases and manifestations, so that when they have had alterations due to cancer or accidents or age, they know what still applies, and which new concerns arise (after all, high estrogen also protects you from some conditions).
We might even get better medical care for cis men, because this might reveal that them getting stomach cancer is not due to diet and work stress, but another factor that could be medically prevented if we properly understood it. I think they have the least the gain, but I do think they still have only to gain here.
For now, it would mostly highlight how much we do not know—because you would look at medical advice with your string and go “so is this relevant for me?”, and at first, the answer would be “we are not sure—people with this whole string here have conditions like that, but we aren’t sure if that still holds if you have the partial one, we’d have to check”. Your vague feeling that the “for women” advice may or may not hold for you would become a concrete and testable one, and then it could be resolved, and we would get clarity. The advice page would eventually say “this holds for all people E>2, whether FS, PS or N—that means it is relevant if you run on estrogen, no matter whether the source is (partially) synthetic” (and you won’t need the string to express this to the patient, but it will make it clearer, and without recording the strings, you won’t get the finding to tell the patient in the first place), and hence, you would get the correct cancer screening no matter your gender. You’d get meds that are actually safe for people like you. You’d get medical recommendations that would be good for people like you, not for whoever the researchers lumped in with “men”.
I would like that. Cancer sucks, no matter your gender. It is such a horrid thing to die off just because we cannot communicate the relevant data.
The standard way to run medical trial is to focus on people that are “normal”. That usually means that people in clinical trials don’t take other drugs that have side effects. From a clinical trial standpoint taking hormones is taking a drug with a lot of side effects that relatively few people in the population take.
The average clinical trial does not recruit an amount of trans participants to measure effects on those and running clinical trials is already expensive enough the way it is currently. That’s extra true if you want to distinguish between the trans population on many axes. The more degrees of freedom you have in your questionaire the more participants you need.
If you want to have population data about cancer rates in trans people who likely can’t have the data privacy as narrow as you propose. You likely need to have the insurance companies have access to the data to see whether there are correlations.
If you care about the topic of adding to the existing data it’s also worthwhile to think in terms of the existing classifications. ICD codes exist for classifying patients. A good questionaire would likely give you the ICD codes for a particular patient.
From there it would be interesting to look at whether the current ICD codes miss important distinctions. If you actually want to get nerdy, you likely need to think in terms like ICD codes.
Accurately assessing sex-related characteristics saves lives. Can we make it fair to all humans, women, men, trans and inter folks? A nerdy idea.
Sex-related characteristics are medically relevant; accurately assessing them saves lives.
But neither assigned sex nor gender identity alone properly capture them. Is anyone else interested in designing a characteristic string instead, so all humans, esp. all women and gender diverse folks, get proper medical care?
This idea started yesterday, when I had severe abdominal pain, and started googling.
Eventually, I reached sites that listed various potential conditions. Some occur in all people (e.g., stomach ulcers), albeit often not with the same presentation and frequency; others have very specific sex-based requirements (e.g. overian cyst, or testicular torsion).
Some webpages introduced ovary-related things as “In women, it can also be…” Well, I thought—I highly doubt my trans girlfriend has an ovarian cyst. But we are used to getting medical advice that does not fit for her, aren’t we? (In retrospect, why did I think that was okay, just because it was so common?)
Other sites, apparently wanting to prevent this, stated “we use female in this text to refer to people assigned female at birth”. I was happy that they had thought about this and cared, but… frankly, that does not work either. I was assigned female at birth; that means I was born, and a doctor visually inspected me, and declared “female”. And yet I most certainly do not have a fallopian tube pregnancy now, because I had my tubes surgerically removed, which also sterilised me. I’m as likely as the dude next door to have a fallopian tube pregnancy now. An inter person assigned female at birth may also be dead certain they do not have an ectopian pregnancy, because their visual inspection at birth actually misjudged their genes and organs quite a bit.
I wondered what I would have liked the website writers to use instead. And the more I thought about it, I thought… this is not an issue of politically correct language. Not a matter of saying the exact same thing, but in a way that makes people feel better. Like, you don’t fix the problem by replacing “woman” with “cis woman” or “assigned female at birth”. All this language exposed was what was a genuine problem in the first place, that the advice was unsuitable for a bunch of people, and that those people weren’t able to get the right advice, and exchanging one piece of vague language for another does not fix that. This is a serious problem that gets people killed.
The state of the medical art used to be that they described the way things manifested in the average cis man, and then if you were a cis woman, they said whatever it was you were complaining about, it was probably your period and/or hysteria. That was bad, and got a lot of people killed.
It killed people on the one hand, because people of all sexes can get a large number of medical problems in common, and having your appendicitis blamed on your uterus is fatal.
But they also did because ovaries, a uterus, breasts and a natural estrogen cycle come with all sorts of unique medical problems (say, breast cancer, which requires frequent screening, or post-partum depression, which can lead to suicide, especially when noone involved understands what the fuck is happening). (The same is true vice versa. A person very, very dear to me got testicular cancer at age 15, and I so, so wish we had known what to look out for, before the cancer had destroyed them, because there were signs.)
Beyond these problems that seem straightforward results of secondary sex characteristics, it turned out that there were other marked differences. E.g. when people lumped in the “men” group have heart attacks, this presents in a particular fashion, and this fashion is taught in medical school and depicted in movies. It turned out that in the “women” group, it tended to present differently, in all sorts of ways. Unfortunately, this led to their heart attacks not being recognised as well, and a lack of medical care in that scenario tends to be fatal. Women have just as many heart attacks as men, but they are likelier to die from them. Your characteristic man clutches his heart in sudden chest pain. Your characteristic woman may instead have jaw pain moving down her back and arm, and a suddenly overwhelming emotional sense that she is about to die. Ignoring her accurate assessment because she isn’t clutching her heart would be very bad. Not would. It is. They die. We have begun to understand how bad this is, and to teach people to look for more diverse heart attack manifestations, but it still is a problem in so many ways.
These issues are pervasive. ADHD and autism are underdiagnosed in women, because they do not look like the nerdy or hyper stereotype people expect. Depression is underdiagnosed in men, because noone expects the men to smile in the first place, so their awful suffering can go unnoticed. Both groups lack the help they need, can’t make sense of their pain, are blamed for it, blame themselves for it, don’t get the right diagnosis, don’t get the medication and therapy that would help. Recognising these differences has the potential to help a lot of people who really fucking need it.
I said “women” (and men) just now. Did I mean cis women (men)? Or all women (men)? Which raises the interesting question: How does heart disease, or being autistic, or being depressed, manifest in trans women, and trans men? Like their sex assigned at birth? Like their lived gender? Or in a uniquely different way due to the unusual combination between the two here? How about an intersex person?
I have no idea. I wouldn’t know where to look. I suspect that noone knows. I suspect this because when I look for medical trials and observations and text book pages, I find trials for men. Sometimes trials for women. But they always mean cis for both, I think. If you are intersex, if you are trans, you are not accounted for in testing, you are screened out before the experiment begins. Not even when the medical interventions are primarily used by trans or inter people.
And this information is also missing in the hospital. Even if the hospital knew how trans people responded to a thing, they do not have their status marked down. The best a trans person can hope for is to have a gender marker that produces dysphoria and leads to them not being recognised in the emergency room being changed into one that does not, so at least, they are not acutely mentally distressed on top of being ill, and the doctor looking for the sick girl who just collapsed will actually find her rather than carrying on walking looking for the boy he was sent to assist. But neither marker will tell the doctor their actual internal organs. Let this sink in. A trans person can be in a hospital, passed out, and the responders can have their purse in hand, telling them all sorts of useless information, and they can start fighting over whether to call her a woman or not, and do these weird stand-ins where they are like “but medically, she is really a man, right?” and no, not right, she is running on estrogen, she does have breasts, she might have had her testes surgically removed and she might not have, she might be intersex in the first place, who knows, the doctors literally do not know which internal organs their patient has.
My mum is a gynacologist. She once spent several distressed minutes during an ultrasound trying to understand where her patients uterus had gotten to. The patient was trans, and thought her surgical alteration would be obvious to a doctor who deals with women’s genitals all day. It was not. But accordingly, if that trans woman had started bleeding from her vagina in the hospital, no one would have batted an eye, even though that ought to be seriously fucking worrying. (A post-menopausal cis woman whose uterus has shut down beginning to bleed again ought to also be very fucking worrying. But worrying in a different way. It usually means uterine cancer.)
And accordingly, whether my girlfriend gets an invite for breast cancer screening (which she ought to, as she did grow breasts and is at higher risk) or a testicular cancer screening (which she ought to, cause she never had those removed) is a matter of pure luck, and she will very likely only get one of these. Though I bet you if she gets the breast cancer screen invite, they will also invite her for a pap smear for non-existent uterus cancer. This random screening would be funny, except we know that cancer screening saves lives.
Going back to my stomach pain website… one of them didn’t do all this “for women” or “for those assigned female” bullshit. It went
“the following conditions would be relevant for those who have ovaries”, and then they were actually overian conditions, and I thought, yep, that is the relevant question here, yay! All ovary-wielders step up, please.
But often, we don’t even know the relevant question yet. E.g., stomach ulcers seem to be more common in men. We could imagine various reasons why. A diet higher in meat, perhaps; or particular kinds of stress, as men are still likelier to work as managers or in the military, incl. typically taking over the most dangerous work with huge responsibility. But in that case, we should worry about meat eaters and people who work in super scary jobs, not men (maybe dump S. boulardii in all the yoghurt in the military canteen and print warnings on the bacon, so you also get the female soldiers who love bacon). But maybe it is actually an issue for men in particular. Because maybe xy chromosomes lead to differently structured stomachs, or testosterone and H. pylori get on well, who knows. But why don’t we know? We ought to know.
The distinctions between sexes that I am coming back to, while they go beyond “assigned female or male”, aren’t actually that many—genes, hormones, sex organs, lived gender.
I’m pretty sure you could list all the relevant questions on a two page questionaire.
And most of the answers could be coded in quite a straightforward manner.
You could end up with a single line string, which any doctor could learn to read in 20 min, and would then be able to interpret at a glance for life, and which would be in your medical file.
You’d have it yourself, for when you figure out which diseases you might have.
You’d have it on a medical licence you carry on you in case you hit the emergency room.
If you are in a medical trial, they would record this string, not m and f, anonymously. And we’d suddenly get much better data on what makes people sick, which of these factors actually correlates with what. E.g. do trans women acquire women’s heart attack manifestation when they take estrogen? Do they never acquire it, because it is genetic only? Do they have it independently of HRT, because it is a learned gender role, or a matter of the brain wiring causing them to be trans in the first place? Or does their unique makeup lead to a different reaction?
It would otherwise be your private, personal medical information, which no boss or other person has a right to. (This bit is bloody important.) Maybe even worth keeping offline only, what with the US becoming so crazy on invading women’s privacy, because this is very, very private and vulnerable information, for you and the doctors and researchers you trust only, noone else’s business. Not for your state ID, but maybe for your healthcare card, or organ donor card, or in case of emergency card. Maybe something you know by heart, like a phone number, and that your life partner knows.
Questionaire ideas:
For any answers that are guessed, and not actually tested, I’d propose adding a star after the answer in the code later, highlighting that it is worth double checking if things get weird. (The recent experiences in the olympics, when people thought to do chromosome testing, hopefully highlight that your belief that you are xx or xy does not actually mean all that much; I’d trust it once you have had a child, and give it reasonable confidence if your appearance, feelings and your bodies’ behaviour have been consistently and archetypically binary throughout adulthood. Otherwise, not. Walk into a fertility clinic, and people with testosterone resistance or Klinefelder or or or are everywhere suddenly. Walk into a gyno office, and the amount of people who need medication for unusual hormones, or hair in places where they do not want it, or periods that come at the wrong time or not at all, are all over the place. Your surprise extra organs can unfortunately get cancer before you realise that they exist.) As there are also some answers where people absolutely won’t know for sure (e.g. hormone levels) but can make a reasonable guess on range, there also needs to be default option one can set (and warn with the star of) until they are checked, like “presumably typical natural testosterone/estrogen during middle age”.
But I think I would record: (And update every few years, more often when something specific has changed)
Sample questionaire
Felt gender identity (Giving 0-5 on a scale for woman and 0-5 on a scale for men—so not a sliding scale in between, but one where you can max or min either) (I thought about having this at the end, as least medically relevant, but I think that would prime the patient to understand their identity through their body as they fill it out last, and it will also lead to the doctor forming a gender assessment that might be wrong and will lead to persistent misgendering later, so quick start with that seems sensible)
Chromosomes: XX, XY, but also the other combinations, like XXY
Sex Hormones: None (child, vs postmenopausal woman not on HRT, distinguish), Natural high testosterone, natural high estrogen, natural mix (potentially sliding scale, again—e.g. I think things like Hirsutism should be captured here; our cut-off for calling someone inter is arbitrarily strict, while real hormones occur more on a sliding scale, with overlap between the female and male range), partially synthetic (birth control pill), fully synthetic (HRT in trans people or post menopause), multiple options possible
Hormone sensitivitiy: None known, mild (PMS), severe (PMDD, postpartum depression)
Grown breasts: No, Yes, Partial (teenager, men’s breasts? Can gynecomastia lead to breast cancer? Do we know?), removed. Possibly also recording implants?
Uterus: Absent, partially removed (burned out, or without opening), present and active (on period), present and inactive (teenager, post-menopausal, shut down via implant, temporarily inactive due to disease), and whether the person has given birth before, as this changes risk factors
Ovaries: Absent from the start, removed, partially removed (sterilisation, ectopian pregnancy), intact
Testes; absent, present, one removed, both removed; possibly whether the person has sired a child (as this is very high confirmation for xy), possibly penis (if that is a significant medical factor for a lot of stuff, I honestly do not know)
Pronoun (so the doctor, looking up from all this info about you, will also know to correctly gender you, yay)
Sample string
You’d end up with something looking maybe like this: (for a fictional trans woman)
W5-M0 - XY* - E:4(FS) T:1(N) - HS:U—B:Y—U:N—O:N—T:Y—she/her
This says:
She feels completely (5) like a woman, not at all (0) like a man;
her chromosomes are presumed XY, but have not been tested;
she is on moderately high estrogen (4), which is fully synthetic, while her testosterone has been pushed down into the female range, (1)
no hormonal sensitivities known;
breasts yes,
uterus no,
ovaries no,
testes yes
pronouns she/her
One could make it shorter, by keeping a particular order forever, but the order might change as we learn stuff, and I think comprehensible is likely more important, so it might even make sense to have more spacing and longer abbreviations. Maybe there could be a super short variant people start using when it becomes more well known.
I find “yes” vs “no” more comprehensible than things like “present, always absent, removed”, but those distinctions likely matter. Like, your anatomy is different when you have never had an organ vs had it removed. So one would have to play around a bit to find something that is easy to read but has all the important stuff, so a doctor sees, at a glance, everything they need.
Hence, we would gain the clear language we need to give appropriate medical care, that cis women have fought so hard for, without throwing their trans sisters and trans brothers under the bus (or rather, leaving them there, in the position cis women used to be in, where you don’t really medically exist, and are expected to figure out the medical implications for yourself). If a doctor asks what you really are, you’d give them this string, and it would accurately capture your gender identity and how you want to be addressed, who you are, while also capturing which bloody organs and hormones you have.
We could record this string when checking our patient for various cancers, and improve screening as we record frequencies.
We could record it while testings meds for trans people on trans people and give the trans people some clear and informative papers to read on the issues so crucial to them, and for which they are vainly scouring the net.
We could get proper care for inter people, who are being treated like they are just sick cis men, or sick cis women, or left stranded, each an individual, alone, without references to anyone else whose suffering they could have learned from so as not to repeat it.
We could get better medical care for cis women, because we could learn which aspect of their bodies causes particular diseases and manifestations, so that when they have had alterations due to cancer or accidents or age, they know what still applies, and which new concerns arise (after all, high estrogen also protects you from some conditions).
We might even get better medical care for cis men, because this might reveal that them getting stomach cancer is not due to diet and work stress, but another factor that could be medically prevented if we properly understood it. I think they have the least the gain, but I do think they still have only to gain here.
For now, it would mostly highlight how much we do not know—because you would look at medical advice with your string and go “so is this relevant for me?”, and at first, the answer would be “we are not sure—people with this whole string here have conditions like that, but we aren’t sure if that still holds if you have the partial one, we’d have to check”. Your vague feeling that the “for women” advice may or may not hold for you would become a concrete and testable one, and then it could be resolved, and we would get clarity. The advice page would eventually say “this holds for all people E>2, whether FS, PS or N—that means it is relevant if you run on estrogen, no matter whether the source is (partially) synthetic” (and you won’t need the string to express this to the patient, but it will make it clearer, and without recording the strings, you won’t get the finding to tell the patient in the first place), and hence, you would get the correct cancer screening no matter your gender. You’d get meds that are actually safe for people like you. You’d get medical recommendations that would be good for people like you, not for whoever the researchers lumped in with “men”.
I would like that. Cancer sucks, no matter your gender. It is such a horrid thing to die off just because we cannot communicate the relevant data.
The standard way to run medical trial is to focus on people that are “normal”. That usually means that people in clinical trials don’t take other drugs that have side effects. From a clinical trial standpoint taking hormones is taking a drug with a lot of side effects that relatively few people in the population take.
The average clinical trial does not recruit an amount of trans participants to measure effects on those and running clinical trials is already expensive enough the way it is currently. That’s extra true if you want to distinguish between the trans population on many axes. The more degrees of freedom you have in your questionaire the more participants you need.
If you want to have population data about cancer rates in trans people who likely can’t have the data privacy as narrow as you propose. You likely need to have the insurance companies have access to the data to see whether there are correlations.
If you care about the topic of adding to the existing data it’s also worthwhile to think in terms of the existing classifications. ICD codes exist for classifying patients. A good questionaire would likely give you the ICD codes for a particular patient.
From there it would be interesting to look at whether the current ICD codes miss important distinctions. If you actually want to get nerdy, you likely need to think in terms like ICD codes.