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
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14 Comments
Hildur Hjaltadottir
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
Clair Kronk
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.
Jim Case
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.
Clair Kronk
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 A lot of it totally contradicts the proposal I made and retains a number of outdated and pathologizing terms.
Jim Case
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 We realize that much of the content is outdated and improperly located int he hierarchies
Clair Kronk
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?)
Jim Case
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.
Clair Kronk
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.
Clair Kronk
Jim Case Ian Green Hildur Hjaltadottir 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.
Emery Potter
I agree with Clair Kronk comments and want to thank you for the work you have done. It feels like we are moving backwards instead of forwards here. Many of these terms are not 'up for discussion' and we need to move forward with the document Clair has worked on. I myself am trans but agree that just one or two trans people on this committee is likely not enough. I am actually a clinician in Toronto on the front lines right now and am going to have to step away from any non-COVID related work as of this week for a time so I will need to take a hiatus from this group. Listen to Clair - she has the answers, and I am not sure the items up for 'discussion' here should be reviewed without the people who would be using them or affected by them. Best, Emery
Jim Case
Since we have not yet discussed the current content in SNOMED and have made no decisions, it is hard to see how we are moving backwards. I would ask that participants in this project group not jump to conclusions about decisions. Our focus is the clinical aspects of sex and gender and including terminology that is practically useful for clinical care. It is important to remember that SNOMED is a terminology and not an information system and the use of terminology within a particular implementation is out of scope for this project (as it is somethng we cannot control).
Clair Kronk
Jim Case while it is true that we have made no decisions, it is not true to say that we haven't discussed the current content in SNOMED, which is partially outlined in the document I created. Moving backwards here refers to the fact that the document that has been provided includes a number of pathologizing and medicalizing conceptualizations which are actively dangerous to patients. Instead of providing a framework which helps, it moves SNOMED backward into a framework which upholds transphobia, nonbinaryphobia, intersexphobia, and homophobia.
Our focus does include terminology which is practically useful to clinical care, which I have provided in my document and updated based on last month's discussion regarding a number of terms. You are saying that SNOMED is a terminology and not an information system and saying that the use of terminology within a particular implementation is out of scope-- while simultaneously proposing an information system which is not built on terminology, rather wrongful assumptions about the bodies of trans and intersex people. You have in fact proposed a disinformation system, so to speak, built for a precise implementation to discriminate against trans and intersex people.
Jim Case
Maybe I have not been effective in describing what this document is. All it represents is the current status of content in SNOMED. It is intended to be informative only (i.e. this is what we currently have). Any comments related to this document should be open discussion and recommendations for improvement, as it is recognized that what we have is suboptimal at best. I am not sure how publishing SNOMED content as a starting point for discussion is a proposal for a disinformation system. The reason I also included the effective dates for the content was to demonstrate that the content is sorely out of date. Please let me be very clear; the original document (minus comments added) IS NOT a proposal, was never intended to be a proposal and will never be a proposal, it is what we have now. It is incorrect to argue that SNOMED as an organization, which has had this content for nearly twenty years in some cases, is systematically discriminating against any group.
Clair Kronk
There is purposeful inclusion of pathologizing and discriminatory language throughout SNOMED ("sodomy", "surgically transgender transsexual", etc.). Systematic discrimination is not a group of people sitting down and deciding to discriminate against a group. It is people excluding people from that group from the discussions that effect them. It is relying on cisnormativity and heteronormativity when designing models, when creating medical standards, and when implementing those standards.
Consider this: Companies don't sit down and "decide" to create products that discriminate against left-handed people. Yet more than 2,500 left-handed people are killed every year because equipment made by those companies is designed around a "norm" which is, in their eyes, right-handedness. That is systematic discrimination.
Kcomt (2018) describes this in a paper entitled "Profound health-care discrimination experienced by transgender people: rapid systematic review":
"Institutional erasure manifests as policies or organizational infrastructure which exclude the existence of trans identities or trans bodies. Examples include intake forms which utilize a binary categorization for sex/gender, settings which use sex segregation as part of their provision of service (e.g., hospital wards, shelters, etc.), and billing systems which require concordance between listed sex and anatomy to allow for billing of sex specific procedures... Sadly, because of their lack of training on the needs of trans populations and trans health issues, many health-care providers reflect society’s cisgenderist attitudes and cisnormative assumptions. Even if they do not align with
cisgenderist ideology on an individual basis, health-care providers often work in broader social contexts which produce and perpetuate cisnormativity and cisgenderism at systemic and structural levels. Underpinned by transphobia and reinforced by erasure, cisnormativity fosters the assumption that all people are cisgender. These assumptions are so pervasive that health-care providers and institutions do not question the experience of gender, do not anticipate the possibility of a trans existence, and thus are unprepared when such a person seeks their services. Paradoxically, the invisibility of trans identities creates a sudden hyper-visibility when a trans patient enters the health-care system such that these situations are regarded as anomalies which challenge the process of medically and culturally competent service delivery (Bauer et al., 2009; Pyne, 2011).
Cisnormativity breeds cisgenderism which refers to the privileging of nontrans identities. Cisgenderism can occur through both unintentional and well-intentioned practices. Examples of cisgenderism may include (a) pathologizing (i.e., characterizing a person’s gender identity as disordered); (b) misgendering (i.e., classifying individuals in a way that is inconsistent with their gender identity); (c) marginalizing (i.e., regarding a person’s gender identity as weird or strange); (d) coercive queering (i.e., imposing a queer or LGBT label on trans people who identify as heterosexual and assuming that they have the same needs as those in same-gender relationships); and (e) objectifying biological language (i.e., using language which describes a person’s assumed physical characteristics such as female-to-male or FTM)
(Ansara, 2015). The conceptual lens of informational and institutional erasure, cisnormativity, and cisgenderism bring the systemic marginalization of trans identities into focus and confront the embodied privilege of the cisgender identity. It captures the nuances of discrimination and the system that empowers it, impacting transgender people’s ability to access appropriate health care."