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

Abstract

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.

The All of Us Research Program: data quality, utility, and diversity

“…This response was mapped to the ethnicity variable, allowing reflection of both race and Hispanic ethnicity. Program designations of status as UBR were adapted to data available in the CDR 23 .…”

Leveraging population‐based exome screening to impact clinical care: The evolution of variant assessment in the Geisinger MyCode research project

“…However, no such formal guidance exists for the research setting, despite a growing consensus to report results that may impact clinical care (Botkin, Mancher, Busta, & Downey, 2018; Knoppers, Zawati, & Senecal, 2015; Saelaert, Mertes, Moerenhout, De Baere, & Devisch, 2020). Furthermore, as more research groups push to sequence larger and more inclusive cohorts (Ilori et al, 2020; Mapes et al, 2020; Van Hout et al, 2020), there is a growing need for guidance on how to accurately and efficiently identify and report clinically relevant findings to research participants.…”

Perspective Developing Successful Collaborative Research Partnerships with AI/AN Communities

“…These modules are often informed from the work of researchers that have established successful research collaborations with Native American tribes that greatly benefit all parties involved and provide insights into the problems plaguing modern Native American communities [8]. Unfortunately, despite these focused programs, funding availability for working with tribal groups, and the success stories of other researchers, the disparity in AI/AN representation in healthcare and research is still prominent [9,10].…”