Loading…

Protocol - Gender Identity

Add to My Toolkit
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 __________________ 

Protocol Name from Source:

All of Us Research Program Participant Provided Information (PPI)

Availability:

Publicly available

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 CategoryRequired
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

Life Stage:

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, Spanish

Standards
StandardNameIDSource
Common Data Elements (CDE) Person Gender Identity Code Ê 6774025 CDE Browser
Derived Variables

None

Process and Review

Not applicable.

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

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).

Google Scholar

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 NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX011801_Gender_Identity_Description PX011801020100 Are any of these a closer description to more
your gender identity? show less
N/A
PX011801_Gender_Identity_Description_Other PX011801020200 Are any of these a closer description to more
your gender identity? Other show less
N/A
PX011801_Gender_Identity_Term PX011801010000 What terms best express how you describe more
your gender identity? (Check all that apply) show less
N/A
Demographics
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

Sex, Transgender, Non-binary, Identity, LGBTQ