Protocol - Gender Identity
Description
A multi-tiered question asking participants to describe their gender identity. Multiple response options are provided along with open-ended self-defined options. It can be self-administered or interviewer administered.
Specific Instructions
While the original protocol is intended for computer administration, the PhenX Steering Committee acknowledges these items would be acceptable for use in paper-pencil questionnaires as well.
Protocol
1a. What terms best express how you describe your gender identity? (Check all that apply)
[ ] Man
[ ] Woman
[ ] Non-binary
[ ] Transgender
[ ] None of these describe me, and I’d like to consider additional options
[ ] Prefer not to answer
Branching logic: If ‘non-binary’, ‘transgender,’ or ‘none of these describe me and I’d like to consider additional options’ selected:
1b. Are any of these a closer description to your gender identity?
[ ] Trans man/Transgender Man/FTM
[ ] Trans woman/Transgender Woman/MTF
[ ] Genderqueer
[ ] Genderfluid
[ ] Gender variant
[ ] Questioning or unsure of your gender identity
[ ] None of these describe me, and I want to specify __________________
Availability
Personnel and Training Required
None
Equipment Needs
The PhenX Steering Committee acknowledges these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.
Requirements
| Requirement Category | Required |
|---|---|
| Major equipment | No |
| Specialized training | No |
| Specialized requirements for biospecimen collection | No |
| Average time of greater than 15 minutes in an unaffected individual | No |
Mode of Administration
Self-administered or interviewer-administered questionnaire
Lifestage
Adult, Senior
Participants
Adults aged 18 and older
Selection Rationale
This protocol was selected because it is both the most up-to-date protocol on gender identity in the literature and it is in use by the All of Us research program, which is a National Precision Medicine Cohort Program.
Language
English, Other languages available at source
Standards
| Standard | Name | ID | Source |
|---|---|---|---|
| caDSR Common Data Elements (CDE) | Person Gender Identity Code | 6774025 | CDE Browser |
Derived Variables
None
Process and Review
Not applicable.
Protocol Name from Source
All of Us Research Program, Participant Provided Information (PPI), 2018
Source
All of Us Research Program Participant Provided Information (PPI) Version: December 17, 2018
General References
The Precision Medicine Initiative Cohort Program – Building a Research Foundation for 21st Century Medicine Precision Medicine Initiative (PMI) Working Group Report to the Advisory Committee to the Director, NIH September 17, 2015
Collins, F. S. and Varmus, H. (2015). A New Initiative on Precision Medicine. N Engl J Med, 372, 793-795
National Research Council. Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease. Washington, DC: National Academies Press, 2011 ( http://www.nap.edu/catalog/13284/toward-precision-medicine-building-a-knowledge-network-for-biomedical-research).
The GenIUSS Group. (2014). Best Practices for Asking Questions to Identify Transgender and Other Gender Minority Respondents on Population-Based Surveys. J.L. Herman (Ed.). Los Angeles, CA: The Williams Institute.
Protocol ID
11801
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX011801_Gender_Identity_Description | ||||
| PX011801020100 | Are any of these a closer description to more | N/A | ||
| PX011801_Gender_Identity_Description_Other | ||||
| PX011801020200 | Are any of these a closer description to more | N/A | ||
| PX011801_Gender_Identity_Term | ||||
| PX011801010000 | What terms best express how you describe more | N/A | ||
Measure Name
Gender Identity
Release Date
June 4, 2019
Definition
One's concept of self as male, female, both, or neither. It describes how individuals perceive themselves and what they call themselves. One's gender identity can be the same or different from the sex assigned at birth.
Purpose
To obtain a person’s self-report of current gender identity.
Keywords
gender identity, sex, transgender, Non-binary, Identity, LGBTQ, Demographics-Populations with HD
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 11801 | Gender Identity |