Protocol - Ethnicity and Race
- Birthplace
- Birthplace of Grandparents
- Birthplace of Parents
- Race/Ethnic Residential Segregation - American Community Survey
- Race/Ethnic Residential Segregation - Separation (S) Index, Unbiased
- Years Living in the U.S.
Description
This protocol includes questions that ask about ethnicity and race with answers that are multiple choice. For Ethnicity, the respondent can specify an ‘other’ ethnicity. For Race, the respondent can select one or more answer choice and write in their specific origin.
Specific Instructions
Open ended responses can pose challenges to analyzing and interpreting data. To assist with standardization of reporting, a list of countries taken from the All of Us Research Program survey is provided for use with this protocol.
Person 1 refers to the respondent.
Availability
Protocol
NOTE: Please answer BOTH Question 1 about Hispanic origin and Question 2 about race. For this census, Hispanic origins are not races.
1. Is Person 1 of Hispanic, Latino, or Spanish origin?
[ ] No, not of Hispanic, Latino, or Spanish origin
[ ] Yes, Mexican, Mexican Am., Chicano
[ ] Yes, Puerto Rican
[ ] Yes, Cuban
[ ] Yes, another Hispanic, Latino, or Spanish origin – Print, for example, Salvadoran, Dominican, Colombian, Guatemalan, Spaniard, Ecuadorian, etc. __________________ (Recommended specific choices)
2. What is person 1’s race? Mark one or more boxes AND print origins.
[ ] White – Print, for example, German, Irish, English, Italian, Lebanese, Egyptian, etc. ______________ (Recommended specific choices)
[ ] Black or African Am. – Print, for example, African American, Jamaican, Haitian, Nigerian, Ethiopian, Somali, etc. ______________(Recommended specific choices)
[ ] American Indian or Alaska Native – Print name of enrolled or principal tribe(s), for example, Navajo Nation, Blackfeet Tribe, Mayan, Aztec, Native Village of Barrow Inupiat Traditional Government, Nome Eskimo Community, etc. _____________ (Recommended specific choices)
[ ] Chinese
[ ] Filipino
[ ] Asian Indian
[ ] Vietnamese
[ ] Korean
[ ] Japanese
[ ] Other Asian – Print, for example, Pakistani, Cambodian, Hmong, etc. ____________ (Recommended specific choices)
[ ] Native Hawaiian
[ ] Samoan
[ ] Chamorro
[ ] Other Pacific Islander – Print, for example, Tongan, Fijian, Marshallese, etc. _____________ (Recommended specific choices)
[ ] Some other race – Print race of origin. _____________________
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 questionnaire
Lifestage
Infant, Toddler, Child, Adolescent, Adult, Senior, Pregnancy
Participants
Adults 18 and older
Selection Rationale
The PhenX Steering Committee (SC) chose to replace two interviewer-administered protocols from the NHANES with a self-report protocol that combines race and ethnicity from the Census 2020. This will help ensure that ethnicity and race are collected together. To address concerns about the free text for origins, the SC offers investigators the list of countries from the All of Us Research Program Participant Provided Information.
Language
English, Other languages available at source
Standards
| Standard | Name | ID | Source |
|---|
Derived Variables
None
Process and Review
The Social Determinants of Health Expansion (SDOH-X) WG reviewed this protocol in April 2022.
Guidance from the SDOH-X WG includes:
Updated source and general references
The Steering Committee (SC) reviewed this protocol in June 2020.
Guidance from the SC includes:
- Replaced or Updated protocol
- New Data Dictionary
Back compatible: no changes to Data Dictionary
Previous version in Toolkit archive (link)
Protocol Name from Source
U.S. Census Bureau, Census 2020, Questionnaire
Source
United States Census 2020 Questionnaire – questions 8 and 9
All of Us Research Program, Participant Provided Information (PPI), Version: October 21, 2019
General References
2019 Census Test Report: A New Design for the 21st Century. Reissued: January 3, 2020, version 1.0. Prepared by: Decennial Statistical Studies Division and American Community Survey Office.
Brown, J., Heggeness, M., Dorinski, S., Warren, L., & Yi, M. (2018). Understanding the Quality of Alternative Citizenship Data Sources for the 2020 Census. Washington, D.C.: U.S. Census Bureau. Retrieved November 26, 2019, from https://www2.census.gov/ces/wp/2018/CES-WP-18-38.pdf
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
The All of Us Research Program Investigators. Special Report: The “All of Us” Research Program. N Engl J Med 2019; 381: 668-676.
Protocol ID
11901
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX011901_Race_Ethnicity_Hispanic | ||||
| PX011901010100 | Is Person 1 of Hispanic, Latino, or Spanish more | N/A | ||
| PX011901_Race_Ethnicity_Hispanic_Other | ||||
| PX011901010200 | Is Person 1 of Hispanic, Latino, or Spanish more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race | ||||
| PX011901020000 | What is person 1's race? Mark one or more more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_American_Indian | ||||
| PX011901020300 | What is person 1's race? American Indian or more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_Black | ||||
| PX011901020200 | What is person 1's race? Black or African more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_Other | ||||
| PX011901020600 | What is person 1's race? Some other race - more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_Other_Asian | ||||
| PX011901020400 | What is person 1's race? Other Asian - more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_Other_Pacific_Islander | ||||
| PX011901020500 | What is person 1's race? Other Pacific more | N/A | ||
| PX011901_Race_Ethnicity_Person_Race_Origin_White | ||||
| PX011901020100 | What is person 1's race? White - Print, for more | N/A | ||
Measure Name
Ethnicity and Race
Release Date
July 21, 2020
Definition
The first item asks whether the person considers himself or herself to be Hispanic, Latino, or Spanish and, if so, asks an additional question about his or her specific Hispanic origin. One or more Hispanic origin categories may be selected.
The second item asks about race, with multiple close-ended answer choices and optional write-in space to provide more country of origin information.
These items are self-reported.
Purpose
Ethnicity is used to stratify study populations and to associate those populations with physical, geographic, biological, social, and cultural characteristics (e.g., Dominican). Ethnicity is a social and epidemiological factor, and individuals of some ethnicity are at greater risk for disease. By capturing the ethnicity of respondents, the researcher will be able to identify those who are or are not of Hispanic origin and will be able to stratify the study population accordingly.
Race is used to stratify study populations and to associate those populations with physical, geographic, biological, social, and cultural characteristics (e.g., African Americans). Race is a social and epidemiological construct, and individuals of some races are at greater risk for certain diseases.
Keywords
U.S. Census Bureau, Census 2020, All of Us, Demographics, Demographics-Populations with HD
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 11901 | Ethnicity and Race |
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
McCurry, K., et al. (2024) Data-driven, generalizable prediction of adolescent sleep disturbances in the multisite Adolescent Brain Cognitive Development Study. Sleep. 2024 June; 47(6). doi: 10.1093/sleep/zsae048
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
Leiker, E., et al. (2024) Recall of Autobiographical Memories Following Odor vs Verbal Cues Among Adults With Major Depressive Disorder. JAMA Network Open. 2024 February; 7(2): e2355958-e2355958. doi: 10.1001/jamanetworkopen.2023.55958
Martin, H. R., et al. (2024) Community-Engaged Research: COVID-19 Testing, Infection, and Vaccination among Underserved Minority Communities in Miami, Florida Vaccines. 2024 January; 12(2): 117. doi: 10.3390/vaccines12020117
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
Correa, K. A., et al. (2023) Hispanic/Latinx ethnic differences in the relationships between behavioral inhibition, anxiety, and substance use in youth from the ABCD cohort Frontiers in Psychiatry. 2023 October; 14: 1251032. doi: 10.3389/fpsyt.2023.1251032
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
Olfson, M., et al. (2023) Prevalence and Correlates of Mental Disorders in Children Aged 9 and 10 Years: Results From the ABCD Study. Journal of the American Academy of Child & Adolescent Psychiatry. 2023 August; 62(8): 908-919. doi: 10.1016/j.jaac.2023.04.005
Lee, R. E., et al. (2023) Acceptability and Feasibility of Saliva-delivered PCR Coronavirus 2019 Tests for Young Children. Pediatrics. 2023 July; 152(1). doi: 10.1542/peds.2022-060352D
Olfson, M., et al. (2023) Treatment of US Children With Attention-Deficit/Hyperactivity Disorder in the Adolescent Brain Cognitive Development Study. JAMA Network Open. 2023 April; 6(4). doi: 10.1001/jamanetworkopen.2023.10999
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
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
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
Purvis, R. S., et al. (2021) Trusted Sources of COVID-19 Vaccine Information among Hesitant Adopters in the United States. Vaccines. 2021 December; 9(12): 1418. doi: 10.3390/vaccines9121418
Braddock, A. S., et al. (2021) Assessing Racial and Ethnic Discrimination in Children: A Scoping Review of Available Measures for Child Health Disparities Research. Health Equity. 2021 October; 5(1): 727-737. doi: 10.1089/heq.2021.0008
Aguinaldo, L. D., et al. (2021) Preliminary analysis of low-level alcohol use and suicidality with children in the adolescent brain and cognitive development (ABCD) baseline cohort. Psychiatry Research. 2021 May; 299: 5. doi: 10.1016/j.psychres.2021.113825
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
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