Submitted by nedragarrett_CDC on
Additional Supporting Documentation for CDC's SOGI Submission
Please see the attachment
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Submitted by nedragarrett_CDC on
Please see the attachment
Submitted by nedragarrett_CDC on
Subject: Additional values in the valueset
Comment: Current birth sex representation values categorizes everything other than ‘Male’ and ‘Female’ into ‘Unknown’. It is important to disaggregate further to accurately represent birth sex categories other than the two mentioned above to evaluate and reflect the needs of the other genders.
The gender valueset being proposed is as follows:
*New values being proposed
Submitted by nedragarrett_CDC on
CSTE Comment:
Submitted by pwilson@ncpdp.org on
Recommend adding Intersex (NCPDP Definition: An individual born with any of several variations in sex characteristics, including chromosomes, gonads, sex hormones or genitals that do not fit the typical definitions of male or female) to “Sex (Assigned at Birth)” to align with the values NCPDP has defined.
Submitted by geneticist on
Sex is a complex set of phenotypes that are not adequately expressed in binary categories, nor is assignment at birth an accurate or useful assessment. This term encompasses primary and secondary sex traits, few of which are identifiable at birth, and there are many possible combinations of these in a given individual. Sex also does not correspond cleanly to chromosomal DNA, which has many possible combinations and which also may not correspond with the development of the body, either with or without medical intervention. Although several of the traits comprising sex are useful in medicine, a single sex designation assigned at birth is not. In short, this is a reductive and obsolete classifier that should be removed entirely.
This data field is also highly likely to miscategorize intersex people regardless of the options offered. Although it is now possible to assign a legal gender marker of 'X' in many states, a majority of intersex people have a binary female or male sex assigned at birth that does not accurately describe them.
Submitted by allycara on
Sex is a complex set of phenotypes that are not adequately expressed in binary categories, nor is assignment at birth an accurate or useful assessment. This term encompasses primary and secondary sex traits, few of which are identifiable at birth, and there are many possible combinations of these in a given individual. Sex also does not correspond cleanly to chromosomal DNA, which has many possible combinations and which also may not correspond with the development of the body, either with or without medical intervention. Although several of the traits comprising sex are useful in medicine, a single sex designation assigned at birth is not. In short, this is a reductive and obsolete classifier that should be removed entirely.
The concept of sex assigned at birth as an immutable personal characteristic is particularly problematic for transgender people, for whom this designation is definitionally incongruent with their present understanding and lived identity, and for intersex people, for whom either single sex assigned at birth is inaccurate. The decision to keep a record of sex assigned at birth in the legal system does great harm to these populations as it is used to approve or deny eligibility for medical procedures, among other use cases, instead of an individual's current body, lived experience, and actual needs. It is also an unnecessary complication when a person's sex can be updated on only some forms of ID depending on state laws, frequently resulting in barriers to travel and administrative headaches. It is in the best interest of all parties to abolish this outdated practice of using sex assigned at birth in any legal capacity whatsoever.
This data field is also highly likely to miscategorize intersex people regardless of the options offered. Although it is now possible to assign a legal gender marker of 'X' in many states, a majority of intersex people have a binary female or male sex assigned at birth that does not accurately describe them. A separate question may better handle this matter. Please see http://web.archive.org/web/20210412083828/https://interactadvocates.org/intersex-data-collection/ for further discussion.
Submitted by Jeffrey Feldman on
Sex is a complex set of phenotypes that are not adequately expressed in binary categories, nor is assignment at birth an accurate or useful assessment. This term encompasses primary and secondary sex traits, few of which are identifiable at birth, and there are many possible combinations of these in a given individual. Sex also does not correspond cleanly to chromosomal DNA, which has many possible combinations and which also may not correspond with the development of the body, either with or without medical intervention. Although several of the traits comprising sex are useful in medicine, a single sex designation assigned at birth is not. In short, this is a reductive and obsolete classifier that should be removed entirely.
The concept of sex assigned at birth as an immutable personal characteristic is particularly problematic for transgender people, for whom this designation is definitionally incongruent with our present understanding and lived identity, and for intersex people, for whom either single sex assigned at birth is inaccurate. The decision to keep a record of sex assigned at birth in the legal system does great harm to these populations as it is used to approve or deny eligibility for medical procedures, among other use cases, instead of an individual's current body, lived experience, and actual needs. It is also an unnecessary complication when a person's sex can be updated on only some forms of ID depending on state laws, frequently resulting in barriers to travel and administrative headaches. It is in the best interest of all parties to abolish this outdated practice of using sex assigned at birth in any legal capacity whatsoever.
This data field is also highly likely to miscategorize intersex people regardless of the options offered. Although it is now possible to assign a legal gender marker of 'X' in many states, a majority of intersex people have a binary female or male sex assigned at birth that does not accurately describe them. A separate question may better handle this matter. Please see http://web.archive.org/web/20210412083828/https://interactadvocates.org/intersex-data-collection/ for further discussion.
Submitted by stephanie_mul_wanko on
Sex is a complex set of phenotypes that are not adequately expressed in binary categories, nor is assignment at birth an accurate or useful assessment. This data field also has no way to categorize intersex people. It should be removed entirely. The terms Female-to-Male and Male-to-Female listed here are obsolete and inappropriate. Binary trans women and men may be correctly identified simply as women and men, without separate categories, and nonbinary trans people as nonbinary.
Submitted by kronkca on
I agree with previous commenters about this set being incomplete and out of step with a number of states which issue "X" birth certificates. This could make such individuals ineligible for a number of life-saving government programs, being unable to sign up without perjuring themselves. (see Princess Janae Place et al v. NY State OTDA et al, for more info: https://www.nyclu.org/en/cases/princess-janae-place-et-al-v-ny-state-office-temporary-and-disability-assistance-et-al).
Myself and 16 other trans people wrote recommendations for assigned gender at birth (AGAB) as an extension to the HL7 Gender Harmony Project's Recorded Sex or Gender because some governments are considered removal of gender markers from birth certificates and that may happen in the near future. Not preparing for such an eventuality will cause further problems down the road.
Therefore we suggested (https://doi.org/10.1093/jamia/ocab136):
"What is your assigned gender at birth, meaning the gender marker which appears on your original birth certificate? Choose one.
- Female ("F")
- Male ("M")
- X
- Unsure
- Prefer not to respond or disclose
- Assigned gender at birth not listed (please specify): ___________" (this is necessary because many countries issue other letters on birth certificates, such as "E" in India or "D" in Germany)"
Unknown would still be the nullflavor in this case.
Intersex is not included as an option because nowhere in the U.S. uses intersex as an AGAB. Intersex people are usually assigned male or female at birth. I suggest reading what intersex people have written themselves on data collection here: http://web.archive.org/web/20210412083828/https://interactadvocates.org/intersex-data-collection/.
Submitted by cmayo@med.umich.edu on
Sex is not gender. We…
Sex is not gender. We recommend use of CDC definitions for sex at birth. This is a fixed value.
https://phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.113883.1.11.1
There are several standards systems in use for separately identifying gender. In the AAPM Operational Ontology for Radiation Oncology the HL7 Reference system is used.
http://hl7.org/fhir/2018May/codesystem-gender-identity.html
Other systems evaluated were
CDC https://phinvads.cdc.gov/vads/ViewValueSet.action?oid=2.16.840.1.113883.1.11.1
DICOM http://dicom.nema.org/medical/dicom/current/output/chtml/part16/sect_CID_7455.html#table_CID_7455
Health IT https://www.healthit.gov/isa/representing-patient-gender-identity
LOINC https://loinc.org/76691-5/