how should I capture gender and sex in medical software?
March 21, 2020 7:43 PM   Subscribe

I'm working on software that presents patient data to clinicians, and stores that data for later analysis. The patient data is plotted against norms for age and gender, and included in later analysis to establish general norms for age and gender. I can't assume that someone should be categorised medically according to their gender identity: I don't know, and don't intend to make the choice as to whether or not data for a 46 year old transgender man should be plotted against norms for 46 year old cis men, nor whether their data should be included with data for 46 year old cis men in later analysis. I want to be able to handle this so people are gendered as they chose, that the appropriate context is given for categorisation of their medical data, and that this is done with sensitivity to complexity of people's relationship with their gender identity.

The Australian Government Guidelines on Recognition of Sex and Gender are a good start in that they make a distinction between Sex and Gender:

link to pdf

Gender: 'part of a person’s personal and social identity. '

Sex is a bit fuzzier : 'refers to the chromosomal, gonadal and anatomical
characteristics associated with biological sex. Individuals may have a range of circumstances or
undergo a variety of treatments that make it difficult to define a true biological sex.'

So some some 46 year old transgender men will have Gender = Male and Sex = Male.
Which would make that patients record indistinguishable from a cis male.

It seems like the software needs the ability to capture not Gender and Sex but
Gender and whether their gender is different to their sex at birth,
and do this in a way that trans people do not find demeaning.

From the Australian Government Standards:

The term ‘trans’ is a general term for a person whose gender is different to their sex at birth.'

Also please consider that, although perhaps post covid, we will organise society around autonomous anarcho-socialist cooperatives, the revolution is still at least eight months away. This software is being developed by good, reasonable intelligent people, at a good company, but people who at least for now are not down for the revolution.

Anything that has a flavour of pushing the envelope of social norms, might get cut.
What I'm looking for is how to push that overton window, and present this in a way that has a flavour of simply and succinctly accommodating the true shape of the world.
posted by compound eye to Human Relations (16 answers total) 3 users marked this as a favorite

So this software is still being written? With the goal of wide applicability? If so, can it be written so that both fields can be captured and sorted independently at the investigator's discretion? There are some conditions/treatments/data for which sex may play a determinant in assessment and this can be lost if only gender is analyzed (expected allele frequency of X-linked genes for instance). However there are many conditions/treatments for which it will not matter at all, but some of that expectation is biased as historical studies often excluded certain groups.
posted by beaning at 8:15 PM on March 21

I think your intuition is right that it's not particularly trans-friendly to ask what sex someone is. It can also be confusing: if someone asks my sex, is the real question about my history or my current body or what? And it can put intersex people in a frankly hostile position.

What's preferred in the corners of the trans community I'm most familiar with is to ask what sex someone was assigned when they were born — with no presumption that that assignment was accurate. So I'd describe myself as a woman who was assigned male at birth (AMAB), and similarly most trans men were assigned female at birth (AFAB), and there are also AMAB men and AFAB women and so on. Because of the way birth certificates are handled in the US, it is very, very rare for someone not to be assigned at birth to one of those categories. (I suspect it's the same in Australia, though you'd know better than me.)

That definition of "trans" you cite is a common one. But in practice, asking whether someone is trans can get you different answers than asking whether their gender matches their assigned sex at birth. First of all, there are intersex people who are assigned the wrong sex at birth, but whose medical and social history is so radically different from most trans people's that they don't consider themselves trans. And second, "trans" is increasingly used as an umbrella term, with different boundaries in some places, such that for instance in some communities (though not mine) an AMAB man who does drag might still call himself trans.

So to minimize ambiguity, your questions should probably be something like "What is your gender?" and "What sex were you assigned at birth?" Depending on the populations you're working with, you may also want to define "assigned sex at birth" or explicitly connect it to what's written on their birth certificate.

(Depending on what you're measuring and comparing to what norms, you may also want to specifically gather information about whether someone takes hormone treatment, and maybe also what bodyparts they have. For instance, knowing someone is an AFAB man doesn't tell you what his hormone levels are, what hormone medications he takes, whether he has a menstrual cycle, whether he has a cervix, etc. For some tests, some of these things are relevant; for others, they aren't.)
posted by nebulawindphone at 8:45 PM on March 21 [3 favorites]

I hear that hospital software around here have the notion of a gender (identification) and 'organ inventory' (parts).
posted by batter_my_heart at 8:48 PM on March 21 [1 favorite]

Yes it is being written now.

Initially the age and gender norms will be taken from prior research.

In time, it is intended that data captured by the software will be used to refine those norms in further research.

Actually what if that's the answer?



Not Known

and make this editable freetext for other combinations:
posted by compound eye at 8:50 PM on March 21

Thank you: "assigned sex at birth"

seems simpler and a question people are more likely to be able to answer
posted by compound eye at 8:53 PM on March 21 [1 favorite]

oh dear, that's confrontingly direct : 'organ inventory' (parts)
posted by compound eye at 8:54 PM on March 21

Yeah, if a provider used the phrase "organ inventory" with me instead of just calling it that internally, I might find it a bit offputting (or refreshingly direct, but that's me). But I've been asked questions like "do you have a uterus?" and "do you have testicles?" and in a medical context they seem fine.

(Bonus: you'll also learn which of your cis women patients have had hysterectomies, which of your cis men patients have lost testicles to cancer or injury, and so on.)
posted by nebulawindphone at 8:57 PM on March 21 [3 favorites]

"how should I capture gender and sex in medical software?"

No matter how it's phrased it'll certainly offend someone, so present the most medically accurate questions and add a box for differing opinions and a disclaimer something like "this is for YOUR health, we need the most medically accurate information for YOUR best diagnosis"

(I was thinking along the lines of a check list of currently installed "parts" -- organ inventory' is brilliant, but, yeah no.
posted by sammyo at 9:11 PM on March 21

This information is not entered by the patient,
it is entered by the clinician.

I don't want to create a situation where a clinician must misgender a patient in order to enter important information.

Because this will be used in ICU and Emergency, the operator will not always know whether the patient was assigned a different sex at birth.

So it looks like I need a phrase the says something like.

"Was the patient assigned a different sex at birth?"

There's pressure to minimise the complexity of the interface, so the more succinct this phrase can be made, the more likely this feature will make it into the software.
posted by compound eye at 9:21 PM on March 21

Use of genotype may present an appearance of accuracy/info that you really don't have. Most people haven't been genotyped. And the number of genotype options to free text is huge (aneuploidies, mosaicism, translocations, etc). Our forms simply ask for pronouns, gender, and biological sex in that order. And if left blank, it's flagged for follow up but until updated, staff and the IT system presume biological sex matches gender.
posted by beaning at 10:16 PM on March 21 [7 favorites]

Two different fields: gender and biological sex. These are familiar terms for clinicians. Reference the Australian guidelines if you want to be complete.

"Sex assigned at birth" is probably better than just "sex" but unless a clinician is directly asking a patient this information, they may not know. And if the clinician is asking the patient, probably best of all is to capture the information directly from the patient (e.g. on a triage form) and skip the potentially biased clinician entirely.
posted by basalganglia at 12:44 AM on March 22

"Was the patient assigned a different sex at birth?"

I would prefer "What sex was the patient assigned at birth"? It decouples it from any judgement of what someone's "current" sex is.

That said, I'm pretty sure I've been given an intake form that said "What sex were you assigned at birth" and, because of various other questions they asked, it was unclear whether they wanted to know the thing they asked or what my birth certificate says, which are two different things.

Note also that depending on how the software is to be used, you may also need to record the gender marker that Medicare (or whatever other insurance there is in Australia) has for the patient. It's much easier on everyone if computers don't barf because someone made an assumption about what gender marker someone has in whatever system (even if they were trying to be helpful!).

Also, I want to put a word in for consulting with whatever trans organisations or community you may reasonably have access to. If you're in a situation where you're crowdsourcing opinions on AskMe, asking actual Australian trans people would be better, as they're experts on their own lives and cultural norms. (I believe the trans people in this thread, including me, are US-based.)
posted by hoyland at 4:45 AM on March 22 [4 favorites]

Re: the organ checklist, my clinic, which is specifically an LGBT health clinic, uses this. I find it very respectful because it’s not assuming anything about my body, and gives a more accurate medical picture. Obviously don’t call it an “organ inventory." As long as you're respectful and say "since we don't want to make any assumptions, we'd like to ask some questions about your body" it is probably the most helpful and respectful option.

Now, this does depend on what kind of clinician is asking. I would be weirded out by an psychologist or audiologist asking this. But a GP or OBGYN--basically anyone I might be talking to about those parts--sure.
posted by brook horse at 6:14 AM on March 22 [2 favorites]

[changed URL to be shorter for mobile users, carry on]
posted by jessamyn (staff) at 9:19 AM on March 22 [2 favorites]

I visited Planned Parenthood last fall for STD testing, and their intake form asked me my gender and the gender of the people I have sex with, then had separate checkboxes for whether I have a vagina or penis, and do the people I have sex with have a vagina or penis (with the possibility to check both if that applies). Anything you can do to just completely make questions about genitals separate from questions about gender is good. Asking about genotype is weird to me, because I don't think that's actually a thing many people know? Many people assume they know, but very few people actually have done genetic testing to back up their assumption. So collecting genotype data seems almost less than useless.
posted by augustimagination at 4:04 PM on March 22 [1 favorite]

Thanks for time you've spent responding.
In my specific case, the software is analysing data from monitoring devices connected to a patient in surgery or intensive care.

The patient data won't be entered by the patient, and the patient won't always be able to be interviewed. so I can't guarantee that the operator knows anything other a rough estimate of the patients height and weight.

Where they have additional information, it may not include information about someone's sex as assigned at birth.

My goal is be respectful in all contexts, and collect data that will be scientifically relevant.

While an organ inventory in an LGBT context where you are filling out the form yourself feels respectful and positive, feels very different to asking a theatre nurse to categorise their patients genitals.

So I'm leaning towards asking for gender and sex, understanding that it is an imperfect compromise, but that it communicates respectfully that in the Sex column I'm not asking for someone’s gender identity.

On the point about asking Australian trans people, I will do that. This isn't for Australia specifically, so thank you mefi for your international* perspectives.

*ok maybe slightly bay areaish skewing perspective

Hope you all have somewhere safe and comfortable to lockdown.
posted by compound eye at 10:41 PM on March 29

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