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.
| Context Definition Name | Context Definition | Synonyms | Example Possible Values |
|---|---|---|---|
Gender Identity *approved at Sept WGM (as Option #2) *approved on 10/7/19 GH call **updated at Feb WGM 2020 | An individual's personal sense of being a man, woman, boy, girl, or something else. Note: If the patient (such as a fetus or infant) is unable to express a personal sense of being a man, woman, boy, girl or any point on the gender spectrum, gender identity is recorded as NotExpressed. Gender identity can be congruent or incongruent with one’s clinical sex assigned at birth based on the appearance of external genitalia. Attributes:
[Based on http://www.jointcommission.org/assets/1/18/LGBTFieldGuide.pdf] | man, woman, boy, girl, Non-binary, NotExpressed See proposed vlaue set here | |
Recorded Gender or Sex (previously Legal Gender)
*Updated at Feb WGM 2020 Agreed this is completed modeling on 2020-07-13 (see meeting notes) | Sex or Gender on an identity document where identity document examples include a passport, driver's license and birth certificate. NOTE: Aligns most closely with existing Administrative Sex / Administrative Gender. This item may or may not represent the patient's clinical sex or gender identity. This element should be qualified by a series of attributes:
| Types: See the list here. Given the definition, Gender Identity, the group agrees that Assigned Gender Identity is not needed. | |
Sex for Clinical Use * approved at Feb WGM 20202 | A category that is based upon observations related to a biological distinction between male and female. NOTE: This is the Sex derived from observable information (e.g., Clinical Observation, Radiology report, Lab report, genetic testing.) This sex context element is intended to help identify when a patient has varied observations. Observation examples: Karyotype, phenotype, sex from Imaging, hormonal values, organ inventory, genetic observations. When observations cannot or have not been made (e.g., traumas), it is common to use Unknown. It is intended that this category be used for workflows such as patient preparation, clinical treatment and equipment settings, and sex-specific analysis techniques. Workflows utilizing SfCU to make setup or analysis determinations could separately capture the resulting specific context-driven choices. The cardinality of this category is 0..1. The category should be qualified by a series of attributes:
| Values: Male, Female, Complex or Diverse (this may not be best phrase, was originally non-binary. Could we use "X"?), Intersex, Unknown Intersex would be a sub-category of "Diverse" Intersex people are individuals born with any of several variations in sex characteristics including chromosomes, gonads, sex hormones, or genitals that, according to the UN Office of the High Commissioner for Human Rights, "do not fit the typical definitions for male or female bodies".[1][2] Such variations may involve genital ambiguity and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.[3][4] |
These were the initial context definitions contributed by the project leadership and participants
| Description | Definition | Synonym | Allowed values | UNK allowed? | Open/Closed | Focus area / perspective of use | Jurisdictional issues | Existing known implementations |
| Gender identity | A 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 identity | Man, Woman, many others | may need to have jurisdictional specific values. X and nonbinary. Need to identify if a context can be shared - privacy | ||||
| Sex identities | A 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.) | Sex | items below this row | |||||
Sex identity to share - multiple? | ||||||||
| Organ-based clinical sex | A characterization of identity that defines allowed values and context of use based on objective characteristics related to sexual reproduction. | Biologic sex | M, F, Intersex | UNK | Closed | |||
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 sex | A characterization of identity that defines allowed values and context of use based on chromosomal findings for the patient. | Genotypic sex, Karyotypic sex | ||||||
| Binary administrative sex | Phenotypic biologic sex identity for use in administrative situations allowing only binary results. | Administrative gender, Administrative sex | M, F | Closed | ||||
Binary with UNK administrative sex = to "Legal Sex"? | Phenotypic biologic sex identity for use in administrative situations requiring only binary results. | M, F | UNK | Closed | ||||
| Unrestricted binary administrative sex | Phenotypic sex identity for use in administrative situations requiring binary results or OTH. | M, F, Other | UNK | Closed | ||||
| Open administrative sex | Unrestricted phenotypic gender identity for use in administrative situations | M, F | UNK | Open | ||||
| 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, Undiferentiated | UNK | Closed | ||||
| Birth certificate sex | Sex identity recorded on the birth certificate. | M, F, Non-binary, Intersex | Closed | |||||
| Study-focused clinical sex | Patient 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 | ||||||||
22 Comments
Linda Michaelsen
Additional source? ISO/IEC 5218 - https://en.wikipedia.org/wiki/ISO/IEC_5218
Alexander Henket
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.
Alexander Henket
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
Alexander Henket
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
Rob McClure
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.
Brian Postlethwaite
Patient Administration has done a write-up of this in the FHIR Patient Resource
http://hl7.org/fhir/patient.html#gender
Craig Newman
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.
Craig Newman
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?
Rob McClure
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?
Unknown User (zanderkeig)
I prefer "natal sex" (def. relating to, or present at birth ) over "biologic sex" or "biological sex" (biology def. living organisms).
Unknown User (dmacfarlane)
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.
Unknown User (zanderkeig)
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.
Unknown User (dmacfarlane)
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.
Unknown User (zanderkeig)
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)
Unknown User (dmacfarlane)
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.
Unknown User (zanderkeig)
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?
Unknown User (dmacfarlane)
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).
Unknown User (zanderkeig)
got it. thanks for responding.
Unknown User (rjhorn)
I added some contexts to the spreadsheet that could go here:
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.
Unknown User (rjhorn)
Two more contexts:
(original number from Australian Government Guidelines on the Recognition of Sex and Gender)
2. The Australian Government is primarily concerned with a person's identity and social footprint. As such, the preferred approach is for Australian Government departments and agencies to collect gender information. Information regarding a person's sex would not ordinarily be required.
note: The regulation defines sex to mean phenotype, and gender to mean social and personal identity; and, it expects that sex and gender will be different independent attributes.
The attributes are coded M/F/X and all 9 combinations of sex and gender shall be supported. (The definitions are in the regulation. X is any combination of characteristics other than the traditional male or female pattern.)
Julie James
Having listened to the discussion about the the Context Definitions, I think it's really important to clearly describe how the contexts must work together to communicate "the set" of gender identity information to be able to care for an individual and how each individual data item may work with another. Some examples of "the set" and how they would be used would be helpful
Something like "a person may have Gender Identify = a, Recorded Gender = b and Sex for clinical use = c" This means that....to work out the normal lab values applicable for test X for this person, value c means "use the male range"; to work out which ward to put them on, use Gender identify value a; when billing for their care, use Recorded Gender value b....etc. etc.
Cooper Thompson
Here are the values for gender identity that our organizations have developed. This is the combined list from across many orgs. I have intentionally not attempted to do any de-duplication or cleanup: