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


Journal

PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081

Informations de publication

Date de publication:
2020
Historique:
received: 22 01 2020
accepted: 01 06 2020
entrez: 2 7 2020
pubmed: 2 7 2020
medline: 17 9 2020
Statut: epublish

Résumé

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.

Identifiants

pubmed: 32609747
doi: 10.1371/journal.pone.0234962
pii: PONE-D-19-34035
pmc: PMC7329113
doi:

Types de publication

Journal Article Research Support, N.I.H., Extramural

Langues

eng

Sous-ensembles de citation

IM

Pagination

e0234962

Subventions

Organisme : NIH HHS
ID : U2C OD023196
Pays : United States
Organisme : NHLBI NIH HHS
ID : K23 HL141447
Pays : United States
Organisme : NIH HHS
ID : OT2 OD023132
Pays : United States
Organisme : NIH HHS
ID : U24 OD023176
Pays : United States
Organisme : NCATS NIH HHS
ID : UL1 TR002550
Pays : United States

Déclaration de conflit d'intérêts

The authors have declared that no competing interests exist.

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Auteurs

Brandy M Mapes (BM)

Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, Tennessee, United States of America.

Christopher S Foster (CS)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Sheila V Kusnoor (SV)

Center for Knowledge Management, Vanderbilt University Medical Center, Nashville, TN, United States of American.

Marcia I Epelbaum (MI)

Center for Knowledge Management, Vanderbilt University Medical Center, Nashville, TN, United States of American.

Mona AuYoung (M)

Scripps Whittier Diabetes Institute, Scripps Health, San Diego, California, United States of American.

Gwynne Jenkins (G)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Maria Lopez-Class (M)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Dara Richardson-Heron (D)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Ahmed Elmi (A)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Karl Surkan (K)

Massachusetts Institute of Technology, Cambridge, Massachusetts, United States of America and All of Us Research Program Participant Representative.

Robert M Cronin (RM)

Department of Biomedical Informatics, Medicine, and Pediatrics, Vanderbilt University Medical Center, Nashville, Tennessee, United States of America.

Consuelo H Wilkins (CH)

Department of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, United States of America.

Eliseo J Pérez-Stable (EJ)

National Institute on Minority Health and Health Disparities, Bethesda, Maryland, United States of America.

Eric Dishman (E)

Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.

Joshua C Denny (JC)

Departments of Biomedical Informatics and Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, United States of America.

Joni L Rutter (JL)

National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, Maryland, United States of America.

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