Understanding the preferences and expectations of underrepresented communities for receiving genetic results in a research setting and navigating additional information and services in the clinical setting are critical to building and maintaining research relationships and engendering trust, particularly with groups who have historically not participated in biomedical research. The proposed supplement leverages a unique opportunity to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited for the All of Us Research Program (AoURP) for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care. We will fulfill the following aims to achieve our objectives: (1) Identify the preferences of African American, Hispanic/Latino and/or uninsured individuals, who reside in communities being recruited for the AoURP, for the return of specific categories of genetic results; and (2) Identify the expectations and needs of African American, Hispanic/Latino and/or uninsured individuals, who reside in communities being recruited for the AoURP to navigate follow-up care related to the return of research results. We will achieve these goals by collecting in-depth qualitative data via twelve focus groups followed by 25 individual interviews with African American, Hispanic/Latino and/or uninsured individuals, who reside in communities being recruited for the AoURP in New York City. This knowledge may be useful in strategies that adapt recruitment and retention strategies to AoURP participants? values and expectations and have significant impact on policy.
This application builds on the R01 study the Ethics of Inclusion: Diversity in Precision Medicine Research and aims to investigate the preferences of African American and Hispanic/Latino communities, including the uninsured, who are being recruited into precision medicine research for different types of genetic test results and their expectations and needs for information and resources to allow for informed, validated follow-up of research results and clinical care.
