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  • NIH Aug 1, 2019 | R21

    Understanding All of Us Enrollees and Decliners Motivations to Enhance Recruitment and Retention

    Principal Investigator(s): Neuhaus, Carolyn P.

    Institution: Hastings Center, INC

    FOA Number: PA-18-591


    The proposed project is a qualitative study of recruitment and retention into the All of Us Research Program (AoURP) at a federally qualified health center (FQHC). A key component of the NIH's Precision Medicine Initiative, the AoURP is unprecedented in scope. AoURP will enroll over one million Americans in its cohort and ask for a 10+ year commitment to participation at sign-up. It will collect genomic, environmental, physiologic, and health data from a variety of sources to build a national public resource for studying the biological, social, and environmental determinants of health and disease. For the benefits of AoURP to be equitably distributed across all Americans, its million-person cohort must include participants from groups that have been historically underrepresented in genomics research. To redress this gap, AoURP aims to enroll 75% of its cohort from underrepresented groups, many recruited at FQHCs. Yet because of documented unethical biomedical research practices with African-American, Hispanic/Latino, and Native American populations many individuals from these groups may be hesitant to enroll. Moreover, AoURP launched at a time of increased public concern over information privacy due to highly publicized social media data breaches and uses of genetic ancestry data for forensic purposes, as well as volatile US immigration policies. The impact of these very recent events on willingness to contribute data for research purposes has yet to be studied, and it is not yet known whether or how these events will influence enrollment in AoURP, or what the study can do to respond to participants' concerns. There is an urgent need for research on the motivations and expectations of AoURP enrollees and the concerns of decliners from these groups. The proposed study will contribute to the long-term goal of advancing diverse participation in precision medicine research. It will do so by pursuing the following aims: (1) Understand what motivates individuals to enroll or not enroll in the AoURP, and why individuals do or do not continue participating over time; and (2) Identify a candidate set of novel strategies for recruiting and retaining participants' especially African Americans and Latinos in AoURP. We will achieve these goals through by collecting in-depth qualitative data, via interviews and observations, regarding AoURP recruitment and retention at an FQHC in New York state that is actively recruiting participants into the AoURP. We will identify novel strategies for recruiting and retaining participants by conducting a literature review and comparative analysis of actual and suggested strategies. This knowledge will contribute towards alignment of recruitment and retention strategies with AoURP participants' values and expectations.




    Funding Type:

    Project Number:

    Start Date:
    Aug 1, 2019

    End Date:
    Jul 31, 2021



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