Sex/Gender Subtypes

I am not sure we would need a "Sex for clinical use" subtype if we approached this the way you describe for "Sex finding" as I think there would be an overlap that would not provide much additional benefit.  Sex for clinical use is an information model construct that I don't think we want to instantiate in the terminology.  This might extend to Sex assignment as well since it is also an information model construct and the values would be very similar if not identical to sex for clinical use.

HI Clair Kronk

Would you be able to clarify the following items on page 52 of the version 6.1 document ?

I apologize for my ignorance on the topic, however, I am attempting to understand why on the first row Male is considered a "nonspecific" term that needs to be removed, but is "specific" enough for use in the second row regarding gender?

Thanks

John

Document

Hi all, sorry for replying late to this thread. Here are my 2-bits worth ...

Recorded gender - In our GSSO action plan work, we had discussed Administrative gender/sex and found it to be problematic as it is defined and used inconsistently. We did include Recorded gender in our mind maps early on to reflect what's captured in current EHR systems, but then excluded it from our final gender mind map since we felt it needs to be addressed as a separate topic on how to migrate existing EHR systems to the new terminology. Our final gender mind map only has Gender identity and Pronouns as the two main concepts. Interestingly HL7 Gender Harmony Project has defined a data element called Recorded sex and gender. I believe it is to accommodate either sex or gender value options captured in existing EHRs as well? I do think a Recorded gender field is needed but we would to explain its purpose - is it to replace Administrative gender in existing EHR systems? And do we also then need a Recorded sex field which may be same as Sex assigned/recorded at birth?

Sex for clinical use - I agree this term should be part of the clinical information model rather than clinical terminology. In HL7 Gender Harmony Project ballot document under this term there is a value C for complex, which is used as a flag to indicate the patient is not a typical male/female sex and require additional assessment. 

Male - I agree we need to make this term more explicit to avoid conflating its meaning since it can mean one's sex or gender. Our SMEs prefer to use the term Man/Boy if it refers to Gender identity, but there is reluctance to use Man/Boy since the concept of Male is too entrenched in our society and systems. In the latest effort to revise the sex-gender classifications, Statistics Canada has proposed to use Male gender and Female gender as the gender categories. This may mean we also need to consider Male sex and Female sex along with Intersex as the categories for sex?

Hi all, the snomed_recommendations_v6.1 document is an amazing piece of work, so thanks Clair! Not being familiar with the document’s structure, I spent some time trying to understand the flow and where I could provide useful feedback. Since I could only handle a few concepts at a time without getting lost, I decided to focus on the proposed 1.2.1 Gender and/or sex finding and its subtypes on page 2. This is where I have some comments and questions:

• 2.1 Gender and/or sex finding is a new concept. I had thought the use of and/or is frowned upon in SNOMED since this means either sex or gender findings can fall under this node as subtypes, such as 1.2.1.1 Gender finding and 1.2.1.2 Sex finding, even when they are different constructs. I wonder if this new concept is meant to address the conflation in existing EHRs of having only one data field for sex/gender? Ontologically is that an issue?
• 2.1.1.2 Gender identity finding is a subtype of 1.2.1.1 Gender finding, both are existing concepts and listed as subtypes of 1.2.1 Gender and/or sex finding. Currently, 1.2.1.1.2 Gender identity finding is a subtype of 118201000|Finding related to development of sexuality (finding)|, and is a descendant of 250171008|Clinical history and observation findings (finding)| but not 365850008|General clinical state finding (finding)|. It does not seem correct to me that gender identity is a subtype of development of sexuality but I am no expert so will just raise it as a question. I noticed on page 52 the table for Terms related to Gender and/or Sex has Gender identity finding listed as an existing concept with no action suggested. Should we propose an action to move it from being a subtype of development of sexuality to a subtype of Gender finding?
• For the new concept 2.1.2.1 Sex assignment finding, I wonder why it is not Recorded sex finding to mirror 1.2.1.1.1 Recorded gender finding, as both concepts have to do with the recording of a person’s sex and gender on documents. If so, it follows that we can have subtypes under Recorded sex finding to distinguish Recorded sex at birth from Recorded sex for clinical use. If we agree that 1.2.1.2.2 Sex for clinical use finding is a legitimate concept then I think further work is needed to describe the different kinds of clinical use?
• I noticed under Recorded gender finding on page 12 there is a subtype 1.6 Gender assignment finding (on page 13). Is this meant to mirror 1.2.1.2.1 Sex assignment finding listed on page 2? Also I am unclear on how 1.6 Gender assignment finding is different from 1 Recorded gender finding?

This posting is already getting long so I will stop here for now. More to come later. Thanks -francis

Hi all, I took a deeper dive into Gender identity finding listed on page 2 of the snomed_recommendations_v6.1 document. I compared the various Gender identity finding subtypes in this document with those in the Gender mind map that was co-created by our Infoway Sex-Gender Working Group members (see PDF attached at end). I should mention our Gender mind map only has a limited number of concepts as they are meant to be value sets that can be implemented in EHRs with sufficient granularity for direct patient care and can be aggregated for population level analysis. We recognize these concepts will evolve over time so the value sets need to be updated regularly. Here are my comments and questions:

• The Gender identity finding outline section on pages 22-23 shows the subtypes of Gender identity finding from page 2. There are 8 immediate descendants listed – Female gender identity, Male gender identity, Non-binary gender identity, Questioning gender identity, Specified gender identity not listed, No gender identity, Unknown gender identity, and Experiences related to gender identity.
• Two subtypes that stood out are Female gender identity and Male gender identity, since our Infoway Gender mind map has Man and Woman as subtypes of Gender identity. We have had many debates about using Man-Woman since the concepts of Male-Female are engrained in our society even they conflate the sex and gender I think using Female gender identity and Male gender identity may be a practical compromise, but would suggest adding Woman and Man as synonyms as they are not among the synonyms listed.
• Our Working Group struggled with how to handle Boy and Girl concepts that are under legal age. I like how the Female gender identity and Male gender identity have subtypes for different age groups that include synonyms such as Boy, Girl, Young man, Preschool child, etc. I do wonder if these age groupings are widely recognized. May be 2 subtypes Female gender identity under legal age and Male gender identity under legal age can be added without specifying the actual age ranges since they can vary between countries.
• I noticed on page 22 for 1.4 Female gender identity between 19 and 44 years of age has a subtype 1.1.4.1 with the same description, so it was unclear why it is there. Same with 1.2.4 Male gender identity between 19 and 44 years of age. Also I noticed the subtypes of 1.2 Male gender identity all have synonyms that still refer to Female gender identity – perhaps they were copied from 1.1 Female gender identity subtypes but not changed to male, so they just need to be corrected.
• It would seem many of the Nonbinary gender subtypes in our Gender mind map are accounted for in the document. Those not in the document are Genderless, Alternating gender, Genderqueer, Gender-nonconforming, Pangender, Transfeminine, and Transmasculine. It is unclear why these concepts are not in the document?
• I really like the concept Culturally-specific gender identity (page 23) and its subtypes (on pages 25-26) in the document. In particular, the subtypes include Two-Spirit which is in our mind map, and a host of other subtypes such as Hijra which we debated in our Working Group but did not make it into our mind map.
• I think the concepts of Cisgender and Transgender may need further discussion. In our mind map, we have Cisgender woman and Transgender woman listed as subtypes of Woman (same with Man) under Gender identity. In the document Cisgender finding and Transgender finding appear under Gender modality finding, which is a sibling of Gender identity finding (see page 2). There is no subtype defined for either Cisgender finding or Transgender finding. In our mind map we have Cisgender man and Cisgender woman as subtypes of Man, and Transgender man (Trans man) and Transgender woman (Trans woman) as subtypes of Woman. I wonder if these subtypes should be added?

I will stop here for now to see what you folks think ... here is our Gender mind map in

Francis

Hi Francis,

I can answer most of these questions/comments in the order they are presented; as most are handled in the document in other areas. Important to consider in all of these answers is that, fundamentally, the majority of providers are not educated in these domains and are more likely to abuse codes than to use them correctly. Providing any options has to take their potential misuse to harm patients into account, especially given SNOMED's international scope. Individual local editions with more trust in their systems could theoretically address particular issues at their discretion in ways that may be different than in the international edition, and I think that manner of doing things is for the best.

• There are 4,203 entries in the international edition with an AND/OR statement, so it appears to not be an issue. The reasoning for having an umbrella term for both addresses the issue that some countries have difficulty translating the concepts of gender/sex separately and may have difficulty differentiating them in the hierarchy and having them as grouping terms helps potentially narrow down issues with search mechanisms. The grouping term will almost certainly not be coded in usage, it's just a grouping term. It's not an ontological issue, and is in line with current SNOMED entries.
• I have not had time to review the over 5,000 terms that need changes; putting together a 60 page document on recommendations is just a start. The overhaul will take years given how many terms are so ridiculously outdated. There are hundreds of terms still left over from the era of sexuality/gender being considered synonymous. Just because I didn't list changes does not necessarily mean that changes do not still need to be made. I agree on removing gender identity from the sexuality hierarchies, as that reflects a completely outmoded way of thinking.
• Sex for clinical use finding is in line with the current HL7 ballot ideas and reflects some discussions therein. It has been already agreed on as a legitimate concept by multiple organizations. Why is there no "recorded sex" finding? Because in medical settings, all recorded sex datum are either sex assignments or sex for clinical use. There shouldn't be any other use cases. The recorded gender is for usage of recordings outside of clinical care (such as those from legal organizations). Recorded sex at birth is a sex assignment at birth; we can list synonyms there, but it will be confusing to have the whole other hierarchy essentially just double the concepts for no discernable reason. Also a sex assignment at birth might not be recorded in a document, but merely reported by the patient and is therefore not necessarily a recorded datum.
• Gender assignment is a subtype of recorded gender because it is always recorded, but it is determined by an entity, rather than by the individual themselves; sex assignment is not because all legal sex and gender data are gender findings by definition as described in the document (a socio-culturally designation is socio-culturally dependent and is therefore a gender datum). This distinction and hierarchy is important given international implications and law which treat such data differently. Basically, a gender assignment could be reported by a patient without textual evidence presented and is therefore separate from the other recorded gender findings to cover those instances, if necessary (for instance, imagine in Germany wherein a trans person updates their gender marker; in that jurisdiction, it is made so the "original" birth certificate never existed and the new birth certificate is the original one; therefore asking "assigned gender at birth" is different from asking what the gender marker is on the person's birth certificate).
• No question/comment here.
• I added woman/man as synonyms. I'm okay with that. The reason for saying "female gender identity" instead of "woman" as the main header as it's more specific and will translate well into non-English language settings better. It's essentially more specific overall.
• These groupings are widely recognized, they are derived from the UMLS and MeSH age categorizations. I think the age ranges are useful because they are independent of the language being utilized and provide an objective determination, rather than inducing subjective determination which may lead to discrimination in some jurisdictions.
• I'm sorry these were copied, I've rectified the mistake. Between this, HL7, DICOM, finishing my defense, accepting my postdoc, and 7 publications, it has been quite the 2 weeks. I appreciate your patience on things like this. I have corrected them in a newer version.
• Genderless versus agender works in English, but does not translate well into other languages. I've added genderless as a synonym for "non-gendered identity" as that concept translates more clearly. "Genderqueer" and "Gender-nonconforming" may be considered offensive and/or discriminatory in many settings and are, more often than not, not considered gender identities but rather forms of gender expression which may be highly controversial or offensive in a given culture. For reasons of translatability regardless of language, I've added pangender as a synonym for multiple gender identity and alternating gender as a synonym for fluctuating gender identity. Transfeminine and transmasculine were not included as (1) they don't translate well into many languages, (2) they may be considered offensive in some jurisdictions, (3) they may be better coded using gender/sex assignment data, and (4) their definitions differ greatly based on who you ask.
• Thank you! I have a list of about 1,000 culturally-specific gender identities, but without local representation from First Nation and Indic communities, I have not added them. I only added the ones for which I have contemporary evidence from people who identify as such.
• Coding "Transgender man", "Transgender woman", "Cisgender man", "Cisgender woman" is discussed in the use cases section I believe. The reason for not including the subtyping is because trans woman, cis woman, cis man, and trans man are not gender modalities nor are they gender identities. They are combinative terms of a gender modality and a gender identity. Adding these subtypes may enable private information about trans people to leak into areas of the EHR that they shouldn't and may further unnecessarily risk patient privacy. It's easier to stop the one code (transgender/cisgender) from being transmitted than to change the one code "trans woman" into just "woman", from a technical perspective. I would vehemently oppose those subtypes being added when they can be more accurately assessed elsewhere.
• Ignoring the posting about subtypes.
• I'm sorry, in putting the document together I forgot to add "sex assignment in infancy" that's my mistake, it will be added. Why is "sex assignment" different from "gender assignment"? I believe I went into this in the document, but basically, internationally and inter-linguistically, the separation of sex and gender is not made. Therefore, installing a simple categorization is best: gender is socio-culturally designated and can vary from culture to culture and from jurisdiction to jurisdiction (therefore all legal documentation and the like is mapped to gender); sex is theoretically culturally independent and if one physician uses sex for clinical use and explains the determination to another physician, it can be replicated regardless of jurisdiction. Therefore: two physicians could make a determination of intersex as a sex assignment, but not as a gender assignment because there is no legal standard for intersex, but there is a set of clinical standards.
• I didn't include the male and female assignments without the perisex and intersex qualifiers because the gender assignment should be used in situations where the perisex/intersex determination is not made (also all births should have a perisex/intersex determination anyway, and doing so more frequently will be a godsend in the arena of intersex human rights). Intersex determinations without time period could be added, but it is much more likely to be useful to use the condition and the assignment at the current date. For instance, a physician sees an adolescent who was not determined to be intersex in infancy and is now displaying signs of an intersex condition. The temporality is insanely useful clinically.
• We could do the age ranges in both, that's fine to me; however, the reason I only added it as a gender identity finding was to cover age-specific terms like girl/boy (these distinctions in terms related to age exist in pretty much every SNOMED jurisdiction). However, the granularity is pretty much the same as the sex assignment datum, but girl/boy are not typically considered sex data, but rather gender data, hence the split.
• I discussed the answer to this above. 
• Yes, we need the subtypes for a number of reasons, including for reproducibility and for mapping to various types of procedures/diagnostics/prognostics. A sex for clinical use related to presence of particular anatomy may mean the difference between a rejected or accepted procedure for a trans and/or intersex person, for instance. I've discussed this separation with both HL7 and DICOM and they've deemed it reasonable. I do think there could be more subtypes added though. However, I don't think a sex for clinical use based on transition use is helpful, it may actively be used to discriminate against pre-transition or early transition patients in some jurisdictions.
• These subtypes are not in SNOMED. They are covered as mappings of sex for clinical use. Also "surgical sex" does not make much sense and is somewhat transphobic in my opinion, as it prioritizes trans persons' assignments based purely on surgical history, which is better covered elsewhere.

Okay, I think that was everything; let me know if I missed anything!

Just a brief note that "and/or" concepts are holdovers from their source as classification concepts (e.g. ICD-9) and are in line for inactivation.  We are no longer adding these types of concepts.