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Diversity and inclusion for the All of Us research program: A scoping review
Open accessAbstract
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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“The All of Us Research Program 90 constitutes another novel and ambitious initiative by the NIH that has enrolled about 400,000 diverse participants of the 1 million people planned across the USA, and is focused on enrolling individuals from broadly defined underrepresented groups in biomedical research, which is especially needed in medical AI 91,92 .”
From Multimodal biomedical AI (2022) · cites this paper as [91]
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The UK Biobank resource with deep phenotyping and genomic data
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The All of Us Research Program Investigators (2019) · New England Journal of Medicine · doi:10.1056/nejmsr1809937 · Cited by 2,440
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Research works printed but not linked: 1
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Acosta, J. N., Falcone, G. J., Rajpurkar, P., & Topol, E. J. (2022) · Nature Medicine · doi:10.1038/s41591-022-01981-2 · Cited by 1,365
Genomic data in the all of us research program
The All of Us Research Program Genomics Investigators, Manuscript Writing Group, Bick, A. G., Metcalf, G. A., Mayo, K. R., Lichtenstein, L., Rura, S., Carroll, R. J., Musick, A., Linder, J. E., et al. (2024) · Nature · doi:10.1038/s41586-023-06957-x · Cited by 829
Self-citationDiversity and scale: Genetic architecture of 2068 traits in the VA Million Veteran Program
Verma, A., Huffman, J. E., Rodriguez, A., Conery, M., Liu, M., Ho, Y.-L., Kim, Y., Heise, D. A., Guare, L., Panickan, V. A., et al. (2024) · Science · doi:10.1126/science.adj1182 · Cited by 463
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Self-citationMaking Pain Research More Inclusive: Why and How
Janevic, M. R., Mathur, V. A., Booker, S. Q., Moraís, C. A., Meints, S. M., Yeager, K. A., & Meghani, S. H. (2021) · Journal of Pain · doi:10.1016/j.jpain.2021.10.004 · Cited by 128
Metadata
- 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
- Venue
- PLOS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2020-07-01
- Volume
- 15
- Issue
- 7
- Pages
- e0234962
- ISSN
- 1932-6203 (ISSN-L)
- 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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