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
Availability
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 __________________
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 |
|---|
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 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
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
sex assigned at birth, transgender, nonbinary, identity, gender fluid, gender diverse, LGBTQ, LGBTQIA
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 11801 | Gender Identity |
Publications
Levites Strekalova, Y. A., et al. (2024) Application of the Delphi method to the development of common data elements for social drivers of health: A systematic scoping review. Translational Behavioral Medicine. 2024 June; 14(7): 426-433. doi: 10.1093/tbm/ibae020
Klein, E. G., et al. (2024) A Randomized Clinical Trial of a Quitline Vaping Cessation Intervention: Baseline Characteristics of Young Adult Exclusive E-Cigarette Users Seeking Treatment. International Journal of Environmental Research and Public Health. 2024 June; 21(6): 809. doi: 10.3390/ijerph21060809
Burnett-Bowie, S. A. M., et al. (2024) The American Society for Bone and Mineral Research Task Force on clinical algorithms for fracture risk report. Journal of Bone and Mineral Research. 2024 May; 39(5): 517-530. doi: 10.1093/jbmr/zjae048
Kosyluk, K., et al. (2024) Mental Distress, Label Avoidance, and Use of a Mental Health Chatbot: Results From a US Survey. JMIR Formative Research. 2024 April; 8(17). doi: 10.2196/45959
Hatch, M. A., et al. (2024) PrEP for people who use opioids: A NIDA clinical trials network survey study in Southern US cities where HIV incidence is high. Drug and Alcohol Dependence. 2024 April; 257(9). doi: 10.1016/j.drugalcdep.2024.111133
Bartholomew, T. S., et al. (2024) Project CHARIOT: study protocol for a hybrid type 1 effectiveness-implementation study of comprehensive tele-harm reduction for engagement of people who inject drugs in HIV prevention services Addiction Science & Clinical Practice. 2024 March; 19(1). doi: 10.1186/s13722-024-00447-9
Cleverley, K., et al. (2024) The Toronto Adolescent and Youth Cohort Study: Study Design and Early Data Related to Psychosis Spectrum Symptoms, Functioning, and Suicidality. Biological Psychiatry-Cognitive Neuroscience and Neuroimaging. 2024 March; 9(3): 253-264. doi: 10.1016/j.bpsc.2023.10.011
Lloyd, S. L., et al. (2024) The Black Men's Health Forum: Improving Health Knowledge and Willingness to Participate in Research Health Education & Behavior: The Official Publication of the Society for Public Health Education. 2024 February; 51(1): 104-112. doi: 10.1177/10901981231206074
Cuca, Y. P., et al. (2024) The Social, Mental, and Physical Health Impacts of the COVID-19 Pandemic on People With HIV: Protocol of an Observational International Multisite Study Journal of the Association of Nurses in AIDS Care. 2024 January; 35(1): 60-74. doi: 10.1097/JNC.0000000000000444
Sharma, P., et al. (2023) A Christian Faith-Based Facebook Intervention for Smoking Cessation in Rural Communities (FAITH-CORE): Protocol for a Community Participatory Development Study JMIR Research Protocols. 2023 December; 12: e52398. doi: 10.2196/52398
Lapidos, A., et al. (2023) Oral Health Recovery: A Peer Support Specialist-Led Health Education Program for People With Serious Mental Illness Psychiatric Services. 2023 November; 74(11): 1196-1199. doi: 10.1176/appi.ps.20220465
Markland, A. D., et al. (2023) Optimizing remote access to urinary incontinence treatments for women veterans (PRACTICAL): Study protocol for a pragmatic clinical trial comparing two virtual care options Contemporary Clinical Trials. 2023 October; 133: 107328. doi: 10.1016/j.cct.2023.107328
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