Protocol - Gender Identity
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.
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.
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 __________________
Personnel and Training Required
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.
|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
Adults aged 18 and older
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.
|caDSR Common Data Elements (CDE)||Person Gender Identity Code Ê||6774025||CDE Browser|
Process and Review
Protocol Name from Source
All of Us Research Program Participant Provided Information (PPI)
All of Us Research Program Participant Provided Information (PPI) Version: December 17, 2018
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
A New Initiative on Precision Medicine
Francis S. Collins, M.D., Ph.D., and Harold Varmus, M.D. January 30, 2015, at NEJM.org
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.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
|PX011801020100||Are any of these a closer description to more||N/A|
|PX011801020200||Are any of these a closer description to more||N/A|
|PX011801010000||What terms best express how you describe more||N/A|
June 4, 2019
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.
To obtain a person’s self-report of current gender identity.
Sex, Transgender, Non-binary, Identity, LGBTQ