Integrating Genomic Risk Assessment for Chronic Disease Management in a Diverse Population

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ABSTRACT This bioethics focused research proposal builds upon pilot data gathered through eMERGE site-specific ELSI research. That research compared rural and urban Alabama Genomic Health Initiative (AGHI) participants from African and European ancestry on a number of issues related to obstacles and attractions to participation in genomic research. Pilot data suggested interesting and stark differences in trusted sources of information among these populations, warranting deeper investigation. In this study, we will focus our investigation more narrowly on trusted sources of information, while simultaneously expanding our recruitment to a national audience. Utilizing both qualitative focus group and quantitative survey data, we will explore key sources of medical information trusted by individuals from White and African American racial backgrounds, including the role of a variety of community leaders and spokespersons, as well as the role of word-of-mouth, venues for dissemination of information, and effective messaging platforms (e.g., religious organizations, social media, television or radio, etc.). In addition, we will identify key contextual factors most salient in establishing trust for participation in genomic screening within each population. Findings will be confirmed using a quantitative survey, which will also look for regional contexts among both White and African American participants. Finally, we will determine whether there are statistically significant differences in trusted sources of a) medical and b) genomic screening information. We will do this through a quantitative survey developed on the basis of preliminary focus group findings. The results of this study will significantly enhance future genomic research by contributing to the recruitment infrastructure necessary to fully diversify participant demographics. The data from this study will result in two deliverables. First, data will be analyzed and disseminated to the larger eMERGE consortium, as well as through publication in a peer-reviewed scientific journal. Second, the data and methodology will provide a basis for development of an R21 or R01 seeking to identify contextual factors influencing trusted sources of information among Asian, Hispanic, Native American, and other demographic groups with specific cultural norms.