Taking action to advance the study of race and ethnicity: the Women’s Health Initiative (WHI).
Open accessAbstract
“Race” and “ethnicity” are socially constructed terms, not based on biology - in contrast to biologic ancestry and genetic admixture - and are flexible, contested, and unstable concepts, often driven by power. Although individuals may self-identify with a given race and ethnic group, as multidimensional beings exposed to differential life influencing factors that contribute to disease risk, additional social determinants of health (SDOH) should be explored to understand the relationship of race or ethnicity to health. Potential health effects of structural racism, defined as “the structures, policies, practices, and norms resulting in differential access to goods, services, and opportunities of society by “race,” have been largely ignored in medical research. The Women’s Health Initiative (WHI) was expected to enroll a racially and ethnically diverse cohort of older women at 40 U.S. clinical centers between 1993 and 1998; yet, key information on the racial and ethnic make-up of the WHI cohort of 161,808 women was limited until a 2020–2021 Task Force was charged by the WHI Steering Committee to better characterize the WHI cohort and develop recommendations for WHI investigators who want to include “race” and/or “ethnicity” in papers and presentations. As the lessons learned are of relevance to most cohorts, the essence of the WHI Race and Ethnicity Language and Data Interpretation Guide is presented in this paper. Recommendations from the WHI Race and Ethnicity Language and Data Interpretation Guide include: Studies should be designed to include all populations and researchers should actively, purposefully and with cultural-relevance, commit to recruiting a diverse sample; Researchers should collect robust data on race, ethnicity and SDOH variables that may intersect with participant identities, such as immigration status, country of origin, acculturation, current residence and neighborhood, religion; Authors should use appropriate terminology, based on a participant’s self-identified “race” and “ethnicity”, and provide clear rationale, including a conceptual framework, for including race and ethnicity in the analytic plan; Researchers should employ appropriate analytical methods, including mixed-methods, to study the relationship of these sociocultural variables to health; Authors should address how representative study participants are of the population to which results might apply, such as by age, race and ethnicity.
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Race and ethnicity are largely social rather than biologic constructs.
“race is now understood to largely be a social rather than a biologic construct [2–5].”
From Race and ethnicity: Risk factors for fungal infections? (2023) · cites this paper as [56]
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Cited by
Sorted by citations
Race and ethnicity: Risk factors for fungal infections?
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- Authors
- Garcia, L., Follis, S., Thomson, C. A., Breathett, K., Cené, C. W., Jimenez, M., Kooperberg, C., Masaki, K., Paskett, E. D., Pettinger, M., Aragaki, A., Dilworth-Anderson, P., & Stefanick, M. L.
- Affiliations
- Stanford Medicine (US)
- University of Arizona (US)
- University of North Carolina at Chapel Hill (US)
- Fred Hutch Cancer Center (US)
- University of Hawaiʻi at Mānoa (US)
- The Ohio State University (US)
- ORCID
- Venue
- Women's Midlife Health
- Published
- 2022-01-04
- Volume
- 8
- Issue
- 1
- Pages
- 1-1
- ISSN
- 2054-2690 (ISSN-L)
- PMC
- PMC8724230
- OpenAlex
- W4205189567
- Cited by
- 29
- References
- 35
- Citations by year
- 2026: 5 · 2025: 5 · 2024: 6 · 2023: 9 · 2022: 4
- FWCI
- 3.62
- Type
- journal article
- Language
- en
- Update notices
- correction (2022-11-25)
- Open access
- hybrid
- doi.org
- Locations
- Women s Midlife Health (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- eScholarship (California Digital Library) (submittedVersion, cc-by)
- IUScholarWorks (Indiana University) (submittedVersion, cc-by)
- Funders
- U.S. Department of Health and Human Services (UM1 CA173642, 75N92021D00002, 75N92021D00005, 75N92021D00004, 75N92021D00001, 75N92021D00003, 75N92021D00001, 75N92021D00002, 75N92021D00003, 75N92021D00004)
- Breast Cancer Research Foundation
- Women's Health Initiative
- Brigham and Women's Hospital
- National Institutes of Health (75N92021D00005, 75N92021D00003, 75N92021D00001, 75N92021D00002, 75N92021D00004)
- National Heart, Lung, and Blood Institute (75N92021D00005, K01HL142848, 75N92021D00004, L30HL148881, 75N92021D00001, 75N92021D00002, 75N92021D00003, 75N92021D00004, 75N92021D00005., R56HL159216, 75N92021D00003, 75N92021D00002, 75N92021D00001)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Social Sciences › Sociology and Political Science › Racial and Ethnic Identity Research
- Social Sciences › Health › Health disparities and outcomes
- Keywords
- race and ethnicity, Women's Health Initiative, social determinants of health, structural racism, self-identification, research data collection, scientific terminology, intersectionality, older women
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