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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. _____________________

Protocol Name from Source:

U.S. Census Bureau, Census 2020, Questionnaire

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

Life Stage:

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, Spanish

Standards
StandardNameIDSource
Common Data Elements (CDE) Ethnic Group Category Text 2192217 CDE Browser
Common Data Elements (CDE) Race Category Text 2192199 CDE Browser
Derived Variables

None

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)

Source

United States Census 2020 Questionnaire – questions 8 and 9

All of Us Research Program, Participant Provided Information (PPI), Version: December 17, 2018

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

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.

Protocol ID:

11901

Variables:
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
Demographics
Measure Name:

Ethnicity and Race

Release Date:

July 21, 2020

Definition

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..

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