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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
Bycroft, C., Freeman, C., Petkova, D., Band, G., Elliott, L. T., Sharp, K., Motyer, A., Vukcevic, D., Delaneau, O., O’Connell, J., et al. (2018) · Nature · doi:10.1038/s41586-018-0579-z · Cited by 8,876
Design of the Women’s Health Initiative Clinical Trial and Observational Study
The Women’s Health Initiative Study Group (1998) · Controlled Clinical Trials · doi:10.1016/s0197-2456(97)00078-0 · Cited by 2,580
The “All of Us” Research Program
The All of Us Research Program Investigators (2019) · New England Journal of Medicine · doi:10.1056/nejmsr1809937 · Cited by 2,440
Genomics is failing on diversity
Popejoy, A. B., & Fullerton, S. M. (2016) · Nature · doi:10.1038/538161a · Cited by 1,924
George, S., Duran, N., & Norris, K. (2014) · American Journal of Public Health · doi:10.2105/ajph.2013.301706 · Cited by 1,603
Bonevski, B., Randell, M., Paul, C. L., Chapman, K. L., Twyman, L., Bryant, J., Brozek, I., & Hughes, C. (2014) · BMC Medical Research Methodology · doi:10.1186/1471-2288-14-42 · Cited by 1,495
Effective recruitment and retention of minority research participants.
Yancey, A., Ortega, A., & Kumanyika, S. (2006) · Annual Review of Public Health · doi:10.1146/annurev.publhealth.27.021405.102113 · Cited by 1,247
Mega, J. L., Simon, T., Collet, J., Anderson, J. L., Antman, E. M., Bliden, K. P., Cannon, C. P., Danchin, N., Giusti, B., Gurbel, P. A., et al. (2010) · JAMA · doi:10.1001/jama.2010.1543 · Cited by 1,142
Million Veteran Program: A mega-biobank to study genetic influences on health and disease
Gaziano, J. M., Concato, J., Brophy, M., Fiore, L., Pyarajan, S., Breeling, J., Whitbourne, S., Deen, J., Shannon, C., Humphries, D., et al. (2016) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2015.09.016 · Cited by 1,055
Development of a Large-Scale De-Identified DNA Biobank to Enable Personalized Medicine
Roden, D. M., Pulley, J. M., Basford, M., Bernard, G. R., Clayton, E. W., Balser, J., & Masys, D. R. (2008) · Clinical Pharmacology & Therapeutics · doi:10.1038/clpt.2008.89 · Cited by 966
Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?
Wendler, D. S., Kington, R. S., Madans, J. H., Wye, G. V., Christ‐Schmidt, H., Pratt, L. A., Brawley, O. W., Gross, C. P., & Emanuel, E. J. (2005) · PLoS Medicine · doi:10.1371/journal.pmed.0030019 · Cited by 874
The “All of Us” Research Program
Sullivan, F., McKinstry, B., & Vasishta, S. (2019) · New England Journal of Medicine · doi:10.1056/nejmc1912496 · Cited by 856
Accessibility, equity and health care: review and research directions for transport geographers
Neutens, T. (2015) · Journal of Transport Geography · doi:10.1016/j.jtrangeo.2014.12.006 · Cited by 617
Systematic Review of Barriers to the Recruitment of Older Patients With Cancer Onto Clinical Trials
Townsley, C. A., Selby, R., & Siu, L. L. (2005) · Journal of Clinical Oncology · doi:10.1200/jco.2005.00.141 · Cited by 587
Origin, Methods, and Evolution of the Three Nurses’ Health Studies
Bao, Y., Bertoia, M. L., Lenart, E. B., Stampfer, M. J., Willett, W. C., Speizer, F. E., & Chavarro, J. E. (2016) · American Journal of Public Health · doi:10.2105/ajph.2016.303338 · Cited by 561
Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients With Cancer
Hamel, L., Penner, L., Albrecht, T., Heath, E., Gwede, C., & Eggly, S. (2016) · Cancer Control: Journal of the Moffitt Cancer Cente · doi:10.1177/107327481602300404 · Cited by 426
Zulman, D. M., Sussman, J. B., Chen, X., Cigolle, C. T., Blaum, C. S., & Hayward, R. A. (2011) · Journal of General Internal Medicine · doi:10.1007/s11606-010-1629-x · Cited by 405
The Persistent Exclusion of Older Patients From Ongoing Clinical Trials Regarding Heart Failure
Cherubini, A., Oristrell, J., Pla, X., Ruggiero, C., Ferretti, R., Diestre, G., Clarfield, A. M., Crome, P., Hertogh, C. M. P. M., Lesauskaitė, V., et al. (2011) · Archives of Internal Medicine · doi:10.1001/archinternmed.2011.31 · Cited by 370
The multiethnic cohort study: exploring genes, lifestyle and cancer risk
Kolonel, L. N., Altshuler, D., & Henderson, B. E. (2004) · Nature reviews. Cancer · doi:10.1038/nrc1389 · Cited by 364
LaVeist, T. A., Pollack, K. M., Thorpe, R. J., Fesahazion, R. G., & Gaskin, D. J. (2011) · Health Affairs · doi:10.1377/hlthaff.2011.0640 · Cited by 330
Boehmer, U. (2002) · American Journal of Public Health · doi:10.2105/ajph.92.7.1125 · Cited by 311
Defining and Targeting Health Care Access Barriers
Carrillo, J. E., Carrillo, V. A., Perez, H. R., Salas-Lopez, D., Natale-Pereira, A., & Byron, A. T. (2011) · Journal of Health Care for the Poor and Underserved · doi:10.1353/hpu.2011.0037 · Cited by 301
Woodall, A., Morgan, C., Sloan, C., & Howard, L. M. (2010) · BMC Psychiatry · doi:10.1186/1471-244x-10-103 · Cited by 281
Tahhan, A. S., Vaduganathan, M., Greene, S. J., Fonarow, G. C., Fiuzat, M., Jessup, M. L., Lindenfeld, J. M., O’Connor, C. M., & Butler, J. (2018) · JAMA Cardiology · doi:10.1001/jamacardio.2018.2559 · Cited by 208
Effective Engagement Requires Trust and Being Trustworthy
Wilkins, C. H. (2018) · Medical Care · doi:10.1097/mlr.0000000000000953 · Cited by 202
Self-citationReisner, S. L., Conron, K. J., Tardiff, L. A., Steele, S. J., Gordon, A. R., & Austin, S. B. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-1224 · Cited by 198
Deutsch, M. B., & Buchholz, D. (2015) · Journal of General Internal Medicine · doi:10.1007/s11606-014-3148-7 · Cited by 171
When will clinical trials finally reflect diversity?
Knepper, T. C., & McLeod, H. L. (2018) · Nature · doi:10.1038/d41586-018-05049-5 · Cited by 142
Friedman, D. B., Foster, C. B., Bergeron, C. D., Tanner, A. H., & Kim, S. (2014) · American Journal of Health Promotion · doi:10.4278/ajhp.130514-qual-247 · Cited by 136
Self-citationLangford, A. T., Resnicow, K., Dimond, E. P., Denicoff, A. M., Germain, D. S., McCaskill‐Stevens, W., Enos, R. A., Carrigan, A. C., Wilkinson, K. A., & Go, R. S. (2013) · Cancer · doi:10.1002/cncr.28483 · Cited by 131
Sexual orientation data collection and progress toward Healthy People 2010
Sell, R. L., & Becker, J. B. (2001) · American Journal of Public Health · doi:10.2105/ajph.91.6.876 · Cited by 127
Determining If Sex Bias Exists in Human Surgical Clinical Research
Mansukhani, N. A., Yoon, D. Y., Teter, K., Stubbs, V. C., Helenowski, I., Woodruff, T. K., & Kibbe, M. R. (2016) · JAMA Surgery · doi:10.1001/jamasurg.2016.2032 · Cited by 116
Novel Approaches to Advance Minority Health and Health Disparities Research
Duran, D. G., & Pérez‐Stable, E. J. (2019) · American Journal of Public Health · doi:10.2105/ajph.2018.304931 · Cited by 116
Self-citationZhu, C. S., Pinsky, P. F., Kramer, B. S., Prorok, P. C., Purdue, M. P., Berg, C. D., & Gohagan, J. K. (2013) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/djt281 · Cited by 105
Pega, F., & Veale, J. F. (2015) · American Journal of Public Health · doi:10.2105/ajph.2014.302373 · Cited by 95
Fredriksen‐Goldsen, K. I., & Kim, H. (2014) · Research on Aging · doi:10.1177/0164027514542109 · Cited by 94
Barriers to Recruitment of Rural Patients in Cancer Clinical Trials
Virani, S., Burke, L., Remick, S. C., & Abraham, J. (2011) · Journal of Oncology Practice · doi:10.1200/jop.2010.000158 · Cited by 91
Schneider, C., Cerwenka, S. C., Nieder, T. O., Briken, P., Cohen‐Kettenis, P. T., Cuypere, G. D., Haraldsen, I., Kreukels, B. P. C., & Richter‐Appelt, H. (2016) · Archives of Sexual Behavior · doi:10.1007/s10508-016-0702-x · Cited by 86
Fisher, E. R., Pratt, R. J., van Esch, R. P., Kocher, M., Wilson, K., Lee, W., & Zierhut, H. A. (2019) · Molecular Genetics & Genomic Medicine · doi:10.1002/mgg3.1099 · Cited by 84
Development of the Initial Surveys for the All of Us Research Program
Cronin, R. M., Jerome, R. N., Mapes, B. M., Andrade, R., Johnston, R., Ayala, J., Schlundt, D. G., Bonnet, K. R., Kripalani, S. B., Goggins, K. M., et al. (2019) · Epidemiology · doi:10.1097/ede.0000000000001028 · Cited by 82
Self-citationThe US Department of Defense Millennium Cohort Study: Career Span and Beyond Longitudinal Follow-Up
Smith, T. C. (2009) · Journal of Occupational and Environmental Medicine · doi:10.1097/jom.0b013e3181b73146 · Cited by 80
Defining “Success” in recruitment of underrepresented populations to cancer clinical trials
Bolen, S. D., Tilburt, J. C., Baffi, C., Gary‐Webb, T. L., Powe, N. R., Howerton, M. W., Ford, J. G., Lai, G. Y., Wilson, R. F., & Bass, E. B. (2006) · Cancer · doi:10.1002/cncr.21745 · Cited by 70
Kim, S., Tanner, A. H., Friedman, D. B., Foster, C. B., & Bergeron, C. D. (2013) · Journal of Community Health · doi:10.1007/s10900-013-9798-2 · Cited by 64
Self-citationThe Challenge of Asthma in Minority Populations
Leong, A., Ramsey, C. D., & Celedon, J. C. (2011) · Clinical Reviews in Allergy & Immunology · doi:10.1007/s12016-011-8263-1 · Cited by 58
Does your organization use gender inclusive forms? Nurses' confusion about trans* terminology
Carabez, R. M., Pellegrini, M., Mankovitz, A., Eliason, M., & Scott, M. (2015) · Journal of Clinical Nursing · doi:10.1111/jocn.12942 · Cited by 55
Nowogrodzki, A. (2017) · Nature · doi:10.1038/550s18a · Cited by 43
Consideration of sex in clinical trials of transdermal nicotine patch: A systematic review.
Weinberger, A. H., Smith, P. H., Kaufman, M., & McKee, S. A. (2014) · Experimental and Clinical Psychopharmacology · doi:10.1037/a0037692 · Cited by 39
Koebnick, C., Coleman, K. J., Black, M., Smith, N., Der-Sarkissian, J. K., Jacobsen, S., & Porter, A. H. (2012) · International Journal of Epidemiology · doi:10.1093/ije/dyq252 · Cited by 32
Deutsch, M. B., Keatley, J. G., Sevelius, J. M., & Shade, S. B. (2014) · Journal of the Association of Nurses in AIDS Care · doi:10.1016/j.jana.2014.04.001 · Cited by 30
Friedman, E., & Gostin, L. O. (2017) · International Journal for Equity in Health · doi:10.1186/s12939-016-0492-8 · Cited by 26
Segarra, I., Modamio, P., Fernández, C., & Mariño, E. L. (2017) · Frontiers in Pharmacology · doi:10.3389/fphar.2017.00488 · Cited by 15
Racial differences in two measures of trust in biomedical research
Cunningham‐Erves, J., Villalta‐Gil, V., Wallston, K. A., Boyer, A. P., & Wilkins, C. H. (2019) · Journal of Clinical and Translational Science · doi:10.1017/cts.2019.378 · Cited by 15
Self-citationCampbell, D. J. T., Manns, B., Hemmelgarn, B. R., Sanmartin, C., & King‐Shier, K. M. (2016) · CMAJ Open · doi:10.9778/cmajo.20160030 · Cited by 12
From sexless to sexy: Why it is time for human genetics to consider and report analyses of sex
Powers, M. S., Smith, P. H., McKee, S. A., & Ehringer, M. A. (2017) · Biology of Sex Differences · doi:10.1186/s13293-017-0136-8 · Cited by 11
Nolan, M. R., & Nguyen, T.-L. (2013) · Journal of Women s Health · doi:10.1089/jwh.2013.4400 · Cited by 10
Laurencin, C. T. (2019) · Science · doi:10.1126/science.aba2319 · Cited by 8
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- M Mitchell, 2008, Sexual orientation research review 2008
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Sorted by citations
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
The All of Us Research Program: Data quality, utility, and diversity
Ramirez, A. H., Sulieman, L., Schlueter, D. J., Halvorson, A., Qian, J., Ratsimbazafy, F., Loperena, R., Mayo, K., Basford, M., Deflaux, N., et al. (2022) · Patterns · doi:10.1016/j.patter.2022.100570 · Cited by 352
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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