Cited by 273Ethics in Clinical ResearchRace, Genetics, and SocietyHealth disparities and outcomes

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Diversity and inclusion for the All of Us research program: A scoping review

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Mapes, Brandy M., Foster, Christopher S., Kusnoor, Sheila V., Epelbaum, Marcia I., AuYoung, Mona, Jenkins, Gwynne, Lopez-Class, Maria, Richardson-Heron, Dara, Elmi, Ahmed, Surkan, Karl, Cronin, Robert M., Wilkins, Consuelo H., Pérez-Stable, Eliseo J., Dishman, Eric, Denny, Joshua C., Rutter, Joni L., the All of Us Research Program·2020·PLOS ONE

DOI 10.1371/journal.pone.0234962PMC PMC7329113

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Abstract

The All of Us Research Program (All of Us) is a national effort to accelerate health research by exploring the relationship between lifestyle, environment, and genetics. It is set to become one of the largest research efforts in U.S. history, aiming to build a national resource of data from at least one million participants. All of Us aims to address the need for more diversity in research and set the stage for that diversity to be leveraged in precision medicine research to come. This paper describes how the program assessed demographic characteristics of participants who have enrolled in other U.S. biomedical research cohorts to better understand which groups are traditionally represented or underrepresented in biomedical research. We 1) reviewed the enrollment characteristics of national cohort studies like All of Us, and 2) surveyed the literature, focusing on key diversity categories essential to the program's enrollment aims. Based on these efforts, All of Us emphasizes enrollment of racial and ethnic minorities, and has formally designated the following additional groups as historically underrepresented: individuals-with inadequate access to medical care; under the age of 18 or over 65; with an annual household income at or below 200% of the federal poverty level; who have a cognitive or physical disability; have less than a high school education or equivalent; are intersex; identify as a sexual or gender minority; or live in rural or non-metropolitan areas. Research accounting for wider demographic variability is critical. Only by ensuring diversity and by addressing the very barriers that limit it, can we position All of Us to better understand and tackle health disparities.

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Fig 1 (A-B). Projected Age, Race, & Ethnicity, and Sex Composition of the United States through 2040.CC0 · PubMed Central

Fig 2 Core demographic characteristics of similar cohorts evaluated to support development of the All of Us guide for diversity and inclusion.CC0 · PubMed Central

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Authors: Mapes, B. M., Foster, C. S., Kusnoor, S. V., Epelbaum, M. I., AuYoung, M., Jenkins, G., Lopez-Class, M., Richardson-Heron, D., Elmi, A., Surkan, K., Cronin, R. M., Wilkins, C. H., Pérez-Stable, E. J., Dishman, E., Denny, J. C., Rutter, J. L., & Program, T. A. O. U. R.
Affiliations: Vanderbilt University Medical Center (US)
National Institutes of Health (US)
Scripps Health (US)
Massachusetts Institute of Technology (US)
Corresponding author: Mapes, Brandy M.
Rutter, Joni L.
ORCID: Mapes, Brandy M.
Foster, Christopher S.
Kusnoor, Sheila V.
Epelbaum, Marcia I.
Cronin, Robert M.
Wilkins, Consuelo H.
Denny, Joshua C.
Rutter, Joni L.
Venue: PLOS ONE
Publisher: Public Library of Science (PLoS)
Published: 2020-07-01
Volume: 15
Issue: 7
Pages: e0234962
ISSN: 1932-6203 (ISSN-L)
DOI: 10.1371/journal.pone.0234962
PMC: PMC7329113
OpenAlex: W3038167169
Cited by: 273
References: 57
Citations by year: 2026: 39 · 2025: 53 · 2024: 65 · 2023: 41 · 2022: 56 · 2021: 18 · 2020: 1
FWCI: 21.69
Type: journal article
Language: en
Open access: gold
doi.org
Licence: public-domain
creativecommons.org/publicdomain/zero/1.0/ (vor)
Locations: PLoS ONE (publishedVersion, public-domain)
PubMed Central (publishedVersion, public-domain)
PubMed (publishedVersion)
RePEc: Research Papers in Economics (submittedVersion)
DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders: NIH Office of the Director (U2COD023196, OT2OD023132, U24 OD023176)
National Center for Advancing Translational Sciences (UL1TR002550)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
Social Sciences › Anthropology › Race, Genetics, and Society
Social Sciences › Health › Health disparities and outcomes
Keywords: All of Us, research participant diversity, underrepresented groups, racial and ethnic minorities, health disparities, precision medicine, socioeconomic status, disability, sexual and gender minorities, rural population, health care access, health equity
MeSH terms: Population Health, Demography, Ethnicity, Female, Humans, Male, Minority Groups, United States, Cohort Studies, Cultural Diversity, Biomedical Research, Racial Groups, Precision Medicine

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Diversity and inclusion for the All of Us research program: A scoping review

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