Diversity and inclusion for the All of Us research program: A scoping review.
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...
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Public Library of Science (PLoS)
2020-01-01
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| Series: | PLoS ONE |
| Online Access: | https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0234962&type=printable |
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| author | Brandy M Mapes Christopher S Foster Sheila V Kusnoor Marcia I Epelbaum Mona AuYoung Gwynne Jenkins Maria Lopez-Class Dara Richardson-Heron Ahmed Elmi Karl Surkan Robert M Cronin Consuelo H Wilkins Eliseo J Pérez-Stable Eric Dishman Joshua C Denny Joni L Rutter All of Us Research Program |
| author_facet | Brandy M Mapes Christopher S Foster Sheila V Kusnoor Marcia I Epelbaum Mona AuYoung Gwynne Jenkins Maria Lopez-Class Dara Richardson-Heron Ahmed Elmi Karl Surkan Robert M Cronin Consuelo H Wilkins Eliseo J Pérez-Stable Eric Dishman Joshua C Denny Joni L Rutter All of Us Research Program |
| author_sort | Brandy M Mapes |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-9febd367f39d49efb63ef2e0a087165e |
| institution | Kabale University |
| issn | 1932-6203 |
| language | English |
| publishDate | 2020-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-9febd367f39d49efb63ef2e0a087165e2025-02-05T05:33:02ZengPublic Library of Science (PLoS)PLoS ONE1932-62032020-01-01157e023496210.1371/journal.pone.0234962Diversity and inclusion for the All of Us research program: A scoping review.Brandy M MapesChristopher S FosterSheila V KusnoorMarcia I EpelbaumMona AuYoungGwynne JenkinsMaria Lopez-ClassDara Richardson-HeronAhmed ElmiKarl SurkanRobert M CroninConsuelo H WilkinsEliseo J Pérez-StableEric DishmanJoshua C DennyJoni L RutterAll of Us Research ProgramThe 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.https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0234962&type=printable |
| spellingShingle | Brandy M Mapes Christopher S Foster Sheila V Kusnoor Marcia I Epelbaum Mona AuYoung Gwynne Jenkins Maria Lopez-Class Dara Richardson-Heron Ahmed Elmi Karl Surkan Robert M Cronin Consuelo H Wilkins Eliseo J Pérez-Stable Eric Dishman Joshua C Denny Joni L Rutter All of Us Research Program Diversity and inclusion for the All of Us research program: A scoping review. PLoS ONE |
| title | Diversity and inclusion for the All of Us research program: A scoping review. |
| title_full | Diversity and inclusion for the All of Us research program: A scoping review. |
| title_fullStr | Diversity and inclusion for the All of Us research program: A scoping review. |
| title_full_unstemmed | Diversity and inclusion for the All of Us research program: A scoping review. |
| title_short | Diversity and inclusion for the All of Us research program: A scoping review. |
| title_sort | diversity and inclusion for the all of us research program a scoping review |
| url | https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0234962&type=printable |
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