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Protocol - Gender Identity

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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
Gender identity is useful as basic demographic information when used with the Sex Assigned at Birth protocol.
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

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

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
StandardNameIDSource
Derived Variables

None

Process and Review

The NIH Sexual and Gender Minority Research Office (SGMRO) reviewed this protocol in August 2023.

  • Made Gender Identity and Sex Assigned at Birth protocols “essential” to one another
  • Added NASEM report reference
  • Removed The Precision Medicine Initiative Cohort Program, Collins, F.S. and Varmus, H., and National Research Council references
  • Updated Specific Instructions
  • Updated Protocol Definition
  • Updated Purpose
  • Updated Keywords

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

National Academies of Sciences, Engineering, and Medicine; Division of Behavioral and Social Sciences and Education; Committee on National Statistics; Committee on Measuring Sex, Gender Identity, and Sexual Orientation. Measuring Sex, Gender Identity, and Sexual Orientation. Becker T, Chin M, Bates N, editors. Washington (DC): National Academies Press (US); 2022 Mar 9. PMID: 35286054.

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 IDVariable DescriptiondbGaP 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

A multidimensional construct that links gender identity, gender expression, and social and cultural expectations about status, characteristics, and behavior that are associated with sex traits. If gender identity and sex assigned at birth are different, it may indicate that a person is transgender.

Purpose

To obtain a person’s self-reported current gender identity. Gender Identity is intended to be used in conjunction with the Sex Assigned at Birth protocol.

Keywords

gender identity, sex assigned at birth, transgender, nonbinary, identity, gender fluid, gender diverse, LGBTQ, LGBTQIA

Measure Protocols
Protocol ID Protocol Name
11801 Gender Identity
Publications

Crusan, A., et al. (2023) Using Community-Based Participatory Research Methods to Inform the Development of Medically Tailored Food Kits for Hispanic/Latine Adults with Hypertension: A Qualitative Study. Nutrients. 2023 August; 15(16): 3600. doi: https://doi.org/10.3390/nu15163600

Bart, T. A., et al. (2023) Measurement invariance of commonly used psychosis-screening scales in US Spanish- and English-speaking Hispanic participants. Psychological Assessment. 2023 April; 35(4): 300-310. doi: 10.1037/pas0001207

Stites, S. D., et al (2023) A systematic review of measures of gender and biological sex: Exploring candidates for Alzheimer's disease and related dementias (AD/ADRD) research. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. 2023 February; 15(1): 1-14. doi: 10.1002/dad2.12359

Chan, N. W., et al. (2022) Social Determinants of Health Data Capture Within National and Health System Data Sources. Journal of the American College of Surgeons. 2022 November; 235(5): S136. doi: 10.1097/01.XCS.0000894008.17070.09

Chan, N. W., et al. (2022) Social determinants of health data in solid organ transplantation: National data sources and future directions. Am J Transplant. 2022 October; 22(10): 2293-2301. doi: 10.1111/ajt.17096

Charron, E., et al. (2022) Pain Severity and Interference and Substance Use Among Community Pharmacy Patients Prescribed Opioids: A Secondary Analysis of the PHARMSCREEN Study. Journal of Pain. 2022 August; 23(8): 1448-1459. doi: 10.1016/j.jpain.2022.03.238

Brown, J. L., et al. (2022) Associations between elevated depressive symptoms and substance use, prescription opioid misuse, overdose history, pain, and general health among community pharmacy patients prescribed opioids. Substance Abuse. 2022 May; 43(1): 1110-1115. doi: 10.1080/08897077.2022.2060450

Scheim, A. I., et al. (2022) Health and Health Care Among Transgender Adults in the United States. Annual Review of Public Health. 2022 April; 43: 503-523. doi: 10.1146/annurev-publhealth-052620-100313

Pomeroy, A., et al. (2022) Protocol for a Longitudinal Study of the Determinants of Metabolic Syndrome Risk in Young Adults. Translational Journal of the American College of Sports Medicine. 2022 April; 7(2): 8. doi: 10.1249/tjx.0000000000000197

Loring, D. W., et al. (2022) Rationale and Design of the National Neuropsychology Network. Journal of the International Neuropsychological Society. 2022 January; 28(1): 11-Jan. doi: 10.1017/S1355617721000199

Schettini, E., et al. (2021) Internalizing-externalizing comorbidity and regional brain volumes in the ABCD study. Development and Psychopathology. 2021 December; 33(5): 1620-1633.

Barch, D. M., et al. (2021) Demographic and mental health assessments in the adolescent brain and cognitive development study: Updates and age-related trajectories. Developmental Cognitive Neuroscience. 2021 December; 52: 101031. doi: 10.1016/j.dcn.2021.101031

Horvath, M., et al. (2021) Smartband-Based Automatic Smoking Detection and Real-time Mindfulness Intervention: Protocol for a Feasibility Trial. Jmir Research Protocols. 2021 November; 10(11): 12. doi: 10.2196/32521

Roth, A. R., et al. (2021) Network recall among older adults with cognitive impairments. Social Networks. 2021 January; 64: 99-108. doi: 10.1016/j.socnet.2020.08.005

Barbirou, M., et al. (2020) Western influenced lifestyle and Kv2.1 association as predicted biomarkers for Tunisian colorectal cancer. BMC Cancer. 2020 November; 20: Article Number: 1086. doi: 10.1186/s12885-020-07605-7

Omodior, O. and W. D. Ramos (2020) Social Determinants of Health-Related Quality of Life: A Recreation Setting Analysis. Health Promotion Practice. 2020 November; 21(6): 952-961. doi: 10.1177/1524839919827572

Harker, J. L. and J. A. Jensen. (2020) Adding insult to rivalry: Exploring the discord communicated between rivals. International Journal of Sports Marketing & Sponsorship. 2020 January; 21(4): 633-649. doi: 10.1108/IJSMS-12-2019-0141

Goodman, M., et al. (2020) Group (?Project Life Force?) versus individual suicide safety planning: A randomized clinical trial. Contemporary Clinical Trials Communications. 2020 January; 17: 100520. doi: 10.1016/j.conctc.2020.100520

Hankins, J. S., et al. (2018) Sickle Cell Clinical Research and Intervention Program (SCCRIP): A lifespan cohort study for sickle cell disease progression from the pediatric stage into adulthood. Pediatr Blood Cancer. 2018 September; 65(9): 27228. doi: 10.1002/pbc.27228

Barch, D. M., et al. (2018) Demographic, physical and mental health assessments in the adolescent brain and cognitive development study: Rationale and description. Dev Cogn Neurosci. 2018 August; 32: 55-66. doi: 10.1016/j.dcn.2017.10.010