Protocol - Ethnicity and Race
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.
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.
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
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.
|Specialized requirements for biospecimen collection||No|
|Average time of greater than 15 minutes in an unaffected individual||No|
Mode of Administration
Infant, Toddler, Child, Adolescent, Adult, Senior, Pregnancy
Adults 18 and older
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.
|caDSR Common Data Elements (CDE)||Ethnic Group Category Text||2192217||CDE Browser|
|caDSR Common Data Elements (CDE)||Race Category Text||2192199||CDE Browser|
Process and Review
The Steering Committee (SC) reviewed this protocol in June 2020.
Guidance from the SC includes:
- Replaced or Updated protocol
- New Data Dictionary
Not back compatible: requires changes to the Data Dictionary. Previous version of the Data Dictionary and Variable mapping in Toolkit archive (link)
Protocol Name from Source
U.S. Census Bureau, Census 2020, Questionnaire
United States Census 2020 Questionnaire – questions 8 and 9
All of Us Research Program, Participant Provided Information (PPI), Version: December 17, 2018
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
U.S. Census Bureau. (2018c). Questions Planned for the 2020 Census and American Community Survey. Washington, D.C.: U.S. Census Bureau. Retrieved January 4, 2019, from https://www2.census.gov/library/publications/decennial/2020/operations/plannedquestions-2020-acs.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.
|Variable Name||Variable ID||Variable Description||dbGaP Mapping|
Ethnicity and Race
July 21, 2020
The first item asks if 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 is asked. 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 to provide more country of origin.These items are self-reported..
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.
U.S. Census Bureau, Census 2020, All of Us, Demographics