Protocol - Ethnicity and Race

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

This protocol is freely available; permission not required for use.

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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 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

U.S. Census Bureau, Census 2020, All of Us, Demographics, Demographics-Populations with HD

Measure Protocols

Protocol ID	Protocol Name
11901	Ethnicity and Race