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Protocol - Ethnicity and Race

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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.

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. _____________________

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 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
StandardNameIDSource
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 IDVariable DescriptiondbGaP Mapping
PX011901_Race_Ethnicity_Hispanic
PX011901010100 Is Person 1 of Hispanic, Latino, or Spanish more
origin? show less
N/A
PX011901_Race_Ethnicity_Hispanic_Other
PX011901010200 Is Person 1 of Hispanic, Latino, or Spanish more
origin? Other, specify: show less
N/A
PX011901_Race_Ethnicity_Person_Race
PX011901020000 What is person 1's race? Mark one or more more
boxes AND print origins. show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_American_Indian
PX011901020300 What is person 1's race? American Indian or more
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 show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_Black
PX011901020200 What is person 1's race? Black or African more
Am. - Print, for example, African American, Jamaican, Haitian, Nigerian, Ethiopian, Somali, etc. Please specify origin: show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_Other
PX011901020600 What is person 1's race? Some other race - more
Print race of origin. Please specify origin: show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_Other_Asian
PX011901020400 What is person 1's race? Other Asian - more
Print, for example, Pakistani, Cambodian, Hmong, etc. Please specify origin: show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_Other_Pacific_Islander
PX011901020500 What is person 1's race? Other Pacific more
Islander - Print, for example, Tongan, Fijian, Marshallese, etc. Please specify origin: show less
N/A
PX011901_Race_Ethnicity_Person_Race_Origin_White
PX011901020100 What is person 1's race? White - Print, for more
example, German, Irish, English, Italian, Lebanese, Egyptian, etc. Please specify origin: show less
N/A
Demographics
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

ethnicity and race, 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

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