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Evaluating Minority Representation in the All of Us Research Program: Progress and Ongoing Challenges
Zhiyu Qian1, Mansoo Cho1, Hari S Iyer1
1Zhiyu Qian, Mansoo Cho, Stuart R. Lipsitz, and Alexander P. Cole are with the Center for Surgery and Public Health, Brigham and Women's Hospital, Harvard Medical School, Boston, MA. Hari S. Iyer is with the Section of Cancer Epidemiology and Health Outcomes, Rutgers Cancer Institute of New Jersey, New Brunswick. Kevin Kensler is with the Department of Population Health Sciences, Weill Cornell Medical College, New York, NY. At the time of this study, Quoc-Dien Trinh was with the Department of Urology, University of Pittsburgh School of Medicine, Pittsburgh, PA.
Racial and ethnic minorities, specifically Asians and Hispanics, remain underrepresented in the All of Us (AoU) Research Program. Regional disparities in participation persist, highlighting the need for continued efforts to achieve equitable representation in precision medicine research.
Area of Science:
- Public Health
- Genomics
- Health Equity
Background:
- The All of Us (AoU) Research Program aims to build a diverse dataset for precision medicine.
- Understanding racial and ethnic representation is crucial for ensuring generalizability of findings.
Purpose of the Study:
- To evaluate trends in racial and ethnic diversity within the AoU Research Program from 2017 to 2023.
- To assess regional disparities in representation compared to US Census benchmarks.
Main Methods:
- Utilized the AoU data repository and 2020 US Census data for comparison.
- Calculated odds ratios (ORs) to quantify underrepresentation by demographic group and region.
Main Results:
- Non-Hispanic White individuals comprised 56.3% of participants; Non-Hispanic Blacks (15.9%), Hispanics (14.9%), Asians (3.5%), and Multiracial/Other (9.4%).
- Asians and Hispanics were consistently underrepresented across the study period.
- Significant regional disparities were observed, with lowest Asian representation in the West (OR=0.48) and most pronounced Hispanic underrepresentation in the South (OR=0.54).
Conclusions:
- Persistent underrepresentation of Asian and Hispanic participants indicates ongoing recruitment challenges in the AoU program.
- Addressing these gaps is essential for achieving the program's scientific and ethical objectives in precision medicine.
- Equitable participation is key to advancing precision medicine research for all populations.
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