Current Sex and Gender content - SNOMED CT
The current status of the Jan 2021 release for sex and gender content. A link to the document for comment is:
https://docs.google.com/document/d/1SYmugsNaJClENcwTDZXz2NoeHayK6ZXke2QTI6hxJFc/edit?usp=sharing
Comments
Jim Case are you contending that this fully replace my proposed document? There seems to be no discussion of that doc in here. I thought that was our last drive from the last meeting, was to address that document, which has been reviewed by nearly 100 of my trans colleagues internationally at this point.
Clair Kronk,
No, it is not intended to replace your proposal, but to focus on the immediate needs that SNOMED has to focus on representation of SOGI content. Your document casts a much wider net. I am looking for a quick win int he short term.
Jim Case understood, however this proposal disregards basically all portions of my proposal, and much of it will be totally changed... A lot of it totally contradicts the proposal I made and retains a number of outdated and pathologizing terms.
Not sure if you read the document correctly. It is not a proposal for how it should look, but a representation of what is currently there, with no preconceived structure in mind. In other words, this is what needs to be fixed. We realize that much of the content is outdated and improperly located int he hierarchies
I'm confused then-- so the "proposed for sub hierarchy"-type constructions are not proposals? They represent information that is not there, they have "proposed" in their titles? (Various forms of "propose" or "proposed" occur over 20 times in the document?)
In the original document (not the comments that have been added) the only uses of the word "proposed" is a reference to another document for discussion related to Sex and a proposal to clarify the existing ambiguity of the two concepts 365873007 |Gender finding (finding)| and 285116001 |Gender identity finding (finding)|. Any other use of the word are proposals made by members of the working group and are advisory and open to discussion. In the spirit of free and open consultation, any member of the group can propose solutions, just as you have in your document.
As I mentioned before the origin of the document was to show what was currently in SNOMED and how it was organized in order to generate discussion on ways to update and improve it.
It cites intersex activism from two decades ago as current. It puts forward the 2021 Endocrine Society paper as law even though it has received massive backlash from both scientists and trans and intersex activists. It describes my partner, who is a lesbian, as "attracted to both sexes" because it views me as "male". I know you're putting forward a "marketplace of ideas" approach here, but somehow it has become more intersexphobic, homophobic, and transphobic than some of the current parts of SNOMED already are.
This isn't a game and I don't appreciate it being treated as such by people who will feel no repercussions from this. I have seen providers leave my siblings to die based on what is in an EHR. When you build and support a system like that, you are indirectly responsible for that.
The "99% of patients are unaffected by this" nonsense is untrue at best and purposefully misleading at worst. At least 25 million people worldwide are transgender. When factoring in gay, bisexual, lesbian, and intersex people this number skyrockets-- but even if we are conservative, it's at least 77 million people worldwide.
Now, this might not be the most apt analogy, but the incidence of nervous system and brain cancers is about 6.4 in 100,000 per year. That's only 494,000 people. Imagine if we just said "well there aren't that many people who get brain cancer, so we just aren't going to add appropriate codes for them". That is obviously extremely unethical, right? SNOMED seems to think so: having ~100 codes relevant to nervous system and brain cancers.
Of course, this analogy isn't 1-to-1 or anything, but the point is that the arguments being showcased do not, and should not, apply in this case or in the proposal documents. It fails to engage with barely any relevant literature on the subject or ever even considers patient concerns.
Jim Case Ian Green Former user (Deleted) I would like to ask that we include more trans, nonbinary, intersex, and gender-diverse people in this group. I'm extremely tired of seeing the same blatant misconceptions, transphobia, and intersexphobia repeated day in and day out with these models. They are inaccurate at best and extremely dangerous to patients at worst. There needs to be more representation and I would ask kindly that you allow me to invite others to this group. It's not enough to just have me, one white American trans woman. Kindly, this system does not really affect you at all. Whereas it heavily affects me, my life, the lives of my friends and chosen family, and my trans siblings. It's ridiculous that on a committee which involves potentially billions of records that there is only one trans representative.
Thank you Jim for your clear guidance regarding the kind of input your are seeking. Roberto and I pasted our response in the document above. We are looking forward to the discussion at the next meeting /Hildur, Roberto