HL7 International Gender Harmony Ballot Comments for Feedback

Thanks for this great summary.

If SFCU is useful (many clinicians must think that it is because we are still talking about it), would not "No Additional Information Specified" (which a clinician can interpret as "Same as Gender Identity" for clinical purposes) and "Additional Information Specified" be the only necessary and the appropriate indicators?

I like the suggestion of "Parameters for Clinical Use" except that it might hide clinically important information in an area of the chart in which no-one ever looks. Maybe, "Additional Information Specified" points to "Parameters for Clinical Use" for more details. We should have somewhere to record the organ inventory (which is going to have to include "organ ABC removed") and genetic information. There are only six viable biological karyotype sexes, as far as anyone knows, but there are also documented chimaera ( February 2015 Nature article, "Sex Redefined" ) and myriad clinical conditions that change the generation and interpretation of hormone signals and all sorts of other things that might fall into "SFCU" territory but would not be captured by the proposed value set.

I support voting Negative on this section. It seems half baked, even all these years on in the discussion. I mean no offence to everyone who has been working and negotiating hard to get to this point! I also do not offer myself as an expert on any of this.

Folks, the UVic team has reviewed the Gender Harmony Ballot (hl7.org/xprod/ig/uv/gender-harmony/2022Sep/index.html) and identified what we think are the top 4 issues. Please reply to this posting to share your thoughts. This ballot is time sensitive. The deadline for posting community comments is Oct7:

1. Gender identity

• In R5 ballot the gender-identity value set is shown in terminology section 4.4.1.478 (www.hl7.org/fhir/2022Sep/valueset-gender-identity.html)
• The value set is listed in section 4.4.1.478.1 Content Logical Definition, it includes all the codes in 2.16.840.1.113762.1.4.1021.106 and Unknown
• You need a VSAC login-id to access the codes in 2.16.840.1.113762.1.4.1021.106; the only options there are “Unknown, Identifies as female gender, Identifies as male gender,” which we think are insufficient
• An alternative set of options listed in FHIR CI-Build (build.fhir.org/valueset-gender-identity.html) include “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender, Unknown.”
• We believe this alternative set of options is acceptable as a basic minimum set of gender identity options because the systems where this set of options will be used may also allow one to add further options as needed. So we propose to vote AFFIRMATIVE for this section. Do you agree?

2. Sex for clinical use (SFCU)

• In R5 ballot the sex-for-clinical-use value set is listed in terminology section 4.4.1.24 (hl7.org/fhir/2022SEP/valueset-sex-for-clinical-use.html)
• For the value set, the codes listed in section 4.4.1.24.2 are “female, male, specified, unknown” with corresponding display values “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use, Unknown,” respectively
• Some SGWG members felt strongly that this data element is discriminatory that promotes cisnormativity, implying anything outside of female and male need to be somehow specified; so we propose to vote NEGATIVE for this section. Do you agree?
• As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clinical conditions may require special/specific considerations as well. Do you agree?
• Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree?

3. Consistency between FHIR, V2.9.1 and CDA value sets

• In HL7 V2.9.1 CH02C_Tables PDF, Table 0821 on p780 for genderIdentity shows display names of “Female, Male, Nonbinary, Unknown” and values “446141000124107, 446151000124109, 3379100008710” which are the SNOMED CT conceptIds for “Identifies as female gender, Identifies as male gender, Identifies as nonbinary gender.”
• We think the display names in Table 0821 should be the same as the SNOMED CT descriptions with the words “Identifies as” and “gender” included to eliminate any ambiguity that they may refer to male and female sex. Do you agree?
• In HL7 V2.9.1 CH02C_Tables PDF, Table 0828 on p788 for Sex for clinical use shows values “female, male, specified” with display names of “Female sex for clinical use, Male sex for clinical use, Specified sex for clinical use.”
• Some SGWG members felt sex for clinical use and its value sets are discriminatory that promotes cisnormativity, so we propose to vote NEGATIVE for this section. Do you agree?
• As an alternative, we suggest to change the label to Parameters for clinical use and separate it from Sex altogether, since other non-sex related clincal conditions may require special/specific considerations as well. Do you agree?
• Another suggestion is to use Organ inventory with a defined value set to remove having to make assumptions about sex status altogether. Do you agree?

4. Ballot content and process

• The R5 ballot package was posted on Sep 16 but the correct Gender identity value set was not posted until Sep29
• With the submission deadline of Oct 7 for the community and Oct 13 for HL7 Canada, we think the timing was too tight for such a complex ballot
• If HL7 wants community participation it needs to make a greater effort to make the ballot content and process easy to understand and follow; currently they are too complicated for non-technical people to take part meaningfully
• If there is a vote to this aspect we propose to vote NEGATIVE as well. Do you agree?

Regards
Francis Lau, Kelly Davison, Karen Courtney, Aaron Devor, Roz Queen
University of Victoria