Pharmacogenomic approaches to drug metabolism in American Indian/Alaska Native People

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Project Summary/Abstract With the establishment of many large biobanks and consortia, and calls for increasing the diversity in participants, it is imperative to develop robust evidence-based approaches to support the engagement of diverse participants and to develop a proper bioethics-informed framework. The parent grant, entitled “Pharmacogenomic approaches to drug metabolism in American Indian/Alaska Native (AIAN) People”, strives to increase diversity in genomics research by developing a general model for research that engages all communities. In this supplement, we enhance the ability to achieve this goal by recruiting members of historically underrepresented communities to share perspectives on important bioethical issues related to participant engagement, return of results, and data sharing. We will identify these individuals by recontacting participants enrolled in the Colorado Center for Personalized Medicine (CCPM) Biobank research study at the University of Colorado Anschutz Medical Campus, who have already consented to participate in genomics research. Using mixed-methods and community-based participatory research frameworks, we aim to: 1) Understand perspectives on participant engagement, return of results, and data sharing from historically underrepresented participants (e.g., AIAN, African American, and Hispanic/Latino) in the CCPM Biobank with focus groups and surveys; and 2) Develop a cross-site framework for assessing biobank participants perspectives and engagement related to bioethical issues in biomedical research. The inclusion of African American and Hispanic/Latino participants, in addition to AIAN communities, aligns with the parent grant goal to equitably engage and build capacity for diverse communities. The CCPM Biobank offers an ideal population for these activities, given its diverse and growing population, unique infrastructure that allows for quick participant recontact, and successful reengagement with participants for research in recent years. Ultimately, these evidence-building efforts are essential for the broader scientific community to develop culturally informed, bioethical policies and frameworks around participant engagement, return of genomics research results, and data sharing.