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|
*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.
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". Such variations may involve genital ambiguity and combinations of chromosomal genotype and sexual phenotype other than XY-male and XX-female.
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.|
|M, F, Intersex||UNK||Closed|
-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|
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|