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This is the set of working definitions that enumerate named context of use for sex and gender codes that specifies concept content and other required information for each potential use-based collection of specified sex and or gender codes. This page captures the working output of the project. The current list is an initial attempt to prime the pump for ideas and definitions. Elsewhere we are calling these - each row is an example of one - sex-gender types.

The set of sex-gender types noted on each row mean to capture how sex-gender codes can be used in a context as well as the context used or assumed in use during the capture of patient clinical information that can be used as a basis for determining the clinical sex identity.  It is expected that these context of use will be an attempt to represent single or combinations of things such as chromosomal allosomes, genotype, hormone levels, secondary sex characteristics, desired perception, surgical status or planned outcome, organ function, etc. It is clear that a single patient may have multiple different codes properly represent them when capturing multiple sex-gender types.

To a large measure this work must be built based on existing contexts for typical known uses because the final product must be able to support existing uses. For example Organ-based clinical sex would indicate that the included member concepts - M, F, Intersex - describe the patients sex organ characteristics. 


DescriptionDefinitionSynonymAllowed valuesUNK allowed?Open/Closed

Focus area perspective of use

Jurisdictional issuesExisting known implementations
Gender identityA self-characterization of identity that is reflective of sexual phenotype but is not restricted to standard binary male or female. This is not a characterization of the preference for sexual partnership (ie: sexual orientation.)Sexual identityMan, Woman, many others



may need to have jurisdictional specific values. X and nonbinary. Need to identify if a context can be shared - privacy 
Sex identitiesA characterization of identity that defines allowed values and context of use based on what is typically called biologic, phenotypic or genetic characteristics. This is not a characterization of the preference for sexual partnership (ie: sexual orientation.)Sexitems below this row




Sex identity to share - multiple? 









Organ-based clinical sexA characterization of identity that defines allowed values and context of use based on objective characteristics related to sexual reproduction. 

Biologic sex


M, F, IntersexUNKClosed


Phenotypic sex

-based on external genitalia 

-based on hormonal level

-based on internal organ

-"summary" phenotypic sex

A characterization of identity that defines allowed values and context of use based on objective visually observable characteristics related to sexual reproduction. 









Chromosomal sexA characterization of identity that defines allowed values and context of use based on chromosomal findings for the patient.Genotypic sex, Karyotypic sex





Binary administrative sexPhenotypic biologic sex identity for use in administrative situations allowing only binary results.Administrative gender, Administrative sexM, F
Closed


Binary with UNK administrative sex

= to "Legal Sex"?

Phenotypic biologic sex identity for use in administrative situations requiring only binary results.
M, FUNKClosed


Unrestricted binary administrative sexPhenotypic sex identity for use in administrative situations requiring binary results or OTH.
M, F, OtherUNKClosed


Open administrative sexUnrestricted phenotypic gender identity for use in administrative situations
M, FUNKOpen


Birth sex

Sex identity assigned at birth.

consider naming "natal sex" (​def. relating to, or present at birth ) over "biologic sex" or "biological sex" = since both trans and cis gender people are "living organisms".


M, F, UndiferentiatedUNKClosed


Birth certificate sexSex identity recorded on the birth certificate.
M, F, Non-binary, Intersex
Closed


Study-focused clinical sexPatient clinical sex used to set up a diagnostic or therapeutic "machine." This is a characteristic of the study done and is based on patient organ function, e.g: kidney function. DICOM source for this.
M,F, Other (unique to the patient alone), Null
?Closed


gender-sex for patient interactions







gender-sex for patient identity 
















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19 Comments

  1. AdministrativeGender is always just that in contexts I know. It is called AdministrativeSex in this list with AdministrativeGender as synonym.

    I don't see how "Unrestricted binary administrative sex" with value "Other" could be marked as a Closed set. Other by default means Open in my mind. So I don't see how it is different from "Open administrative sex"

    AdministrativeGender for The Netherlands is defined by the national person registry BRP/GBA. The logical design (Dutch) may be found here on page 247:

    Element 04.10 Geslachtsaanduiding (Indication of Gender)

    M = male, V = female, O = unknown

    Definition: An indicator that determines that the registered party is a male or a female, or that the gender is (still) unknown.

    The Dutch BRP/GBA also procedures in place to change the administrative gender over time, so it is not just gender at birth.

  2. LOINC has an answer list for GenderIdentity: https://s.details.loinc.org/LOINC/76691-5.html?sections=Comprehensive

    SNOMED CT has 429019009 Finding related to biological sex that has some overlap with LOINC

  3. I believe the current definition of "Gender identity" is not correct. It is not (necessarily) connected to phenotypical facts, but according to at least wikipedia it is:

    Gender identity is the personal sense of one's own gender.

    I believe the current definition of "Sex Identity" is not correct. It is not (necessarily) connected to phenotypical facts, but according to wikipedia it is:

    Sexual identity is how one thinks of oneself in terms of to whom one is romantically or sexually attracted

  4. Alexander Henket Appreciate these contributions. We will work through these comments during our quarter (Wed Q4). One note on the Sex Identity versus Sexual Identity. In short, we don't have enough words in English for this and the word Sex was chosen to explicitly not mean Sexual. In fact it is an attempt to make the meaning of Sex Identity to be something distinct from Sexual Identity and from Gender Identity. 

  5. Patient Administration has done a write-up of this in the FHIR Patient Resource

    http://hl7.org/fhir/patient.html#gender

  6. We'll have to be sensitive to the fact that the different sub-types under Sex Identity (biologic, phenotypic or genetic characteristics) may legitimately be at odds for a given individual (a person may be genetically male (XY) but phenotypically female). This sort of situation may be an indication of a data quality issue but may be legitimate in some cases.

  7. I'm also not clear on the difference between phenotypic sex and organ-based clinical sex. Other there other phenotypic characteristics beyond sex organs which are used to evaluation the phenotypic sex? Are things like facial hair or a pronounced adam's apple a sufficient basis for assigning a phenotypic sex?

    1. My definition of phenotype sex would be based on external sex characteristics which could involve anything you can see. I'd agree these absolutely could be "in conflict" wherein based on hormone therapy secondary characteristics could be one sex and the genitalia another. SO perhaps we need to split this even further to make something specific to genitalia. But even then you can add breast tissue, and it goes from there. I think we should add more sex-gendertypes and then we can trim later. 

      When I mention "organ" I'm thinking internal organs but even with this I'd have to include testis. Lines drawn in this area become pretty thin.

      Thoughts?

  8. I prefer "natal sex" (​def. relating to, or present at birth ) over "biologic sex" or "biological sex" (biology def. living organisms).

    1. I'd agree that natal sex is preferable to biological sex, AND, what I hear in trans communities in Canada has me think that "assigned sex" would likely be preferred over "natal sex," as the commonly used phrase is  "sex assigned at birth" - which can encompass people who are intersex but were assigned female or male at birth, whether or not it's realized at birth that the person is intersex. 


      It's also a bit more sensitive to people whom I might describe as trans, and who might describe themselves (for example) as someone who were born a girl but needed a while to get people to listen to them and stop calling them a boy, and to get the medical interventions they needed to have their body align to their sense of self as a woman.   

      1. I find that "assigned" references to natal sex tend to come from the more political (radical, progressive, activist) members of the trans community and allies who align with that ideology. It goes hand in hand with the very questioning of the legitimacy of biology: male and female majority.

        1. Interesting - while I suspect the roots of language are the same / similar, my sense is that in Canadian  health contexts that have a focus on serving trans people - including some fairly mainstream ones, and even starting to spread into the federal government,  language about "sex assigned at birth" is relatively normalized & I think will spread farther quickly. The shorter version of this is "sex at birth" rather than "natal sex".   Here are links to a couple of federal gov't websites with descriptions of sex and gender.
          https://www12.statcan.gc.ca/census-recensement/2021/road2021-chemin2021/fs-fi/sex-and-gender.cfm

          https://cfc-swc.gc.ca/gba-acs/course-cours/eng/mod01/mod01_02_04.html

          (There are a couple of minor tweaks to the language that would be needed to be most accurate).


          I'd agree that some of the related acronyms / terms (AMAB, AFAB- for folks who are reading who are newer to trans terminologies, those stand for assigned male at birth, or assigned female at birth), aren't at all normalized and are most common amongst the more political trans folks & allies in Canada as well.

  9. My current employer's EMR (Stratus EMR 2.0) uses "legal sex" and gives two options: male and female; and "gender identity" and gives multiple options: Gender Variant, Intersex, Man, Questioning, Transgender, Woman, Decline to Answer, Not Applicable (due to age)

    1. From my perspective, the challenge re "legal sex" is that that can change, as can "Sex as recorded on birth certificate", while organ systems present don't change.

      1. I agree about "legal sex" and "sex recorded on BC," but I'm not sure I understand what you mean by "organ systems present don't change." In my case, I have surgically had removed ALL natal reproductive system organs. Do you mean something else?

        1. Thanks - I wasn't clear.  Agreed that changes happen through people having their natal reproductive organ systems removed, however the degree of change possible is limited (eg. trans women still have prostates to be screened no matter what other surgeries they do or don't have; they won't have ovaries / uteruses to screen,  pregnancy screening won't be relevant, just as trans men won't have prostates to screen / won't be at risk for testicular cancer, etc). 

          1. got it. thanks for responding.

  10. I added some contexts to the spreadsheet that could go here:

    Patient ID ConfirmationSex/gender is used to quickly confirm the patient identification.  E.g., when a patient is put onto the table for a CT exam, the technician does a quick check of patient age/sex/height/weight comparing real patient with ordered patient.  A mismatch triggers more detailed confirmation.  Patient might be clothed/unclothed and conscious/sedated/unconscious
    Procedure selectionMany procedures have sex specific procedure aspects, e.g., radiation shielding choices.
    Machine settingsMany procedures require machine settings, usually M/F/Other that control internal operations and computations such as dosage computation.  M/F are usually built in.  O means do something special that will be described in the order.
    Analysis settingsMany procedures and reports require a selection of M/F/O for computation of results from measurements.  E.g., dosage.  M/F are usually built-in.  O means do something special that will be described in the order.
    Out of context statistical analysisMany statistical analyses are based upon extraction of a sex attribute into an aggregate that loses context.

    The first four are mostly phenotypical considerations.  The phenotype is subject to change, and in some procedural situations it will be details of one aspect of phenotype, such as organ structure.