Project ENGAGE: Evaluating information needs to generate community engagement and genomics education

As genomics research and its applications gain momentum, genomics education materials are needed which are easy to understand by both research participants and the public at large. Project ENGAGE aims to explore community members' attitudes, knowledge and information needs regarding genetics and genomics, and develop appropriate, accessible educational materials. The target population is a predominantly low income, minority community. In Phase 1 of Project ENGAGE, we established connections with community representatives, developed a focus group moderator guide with their input, and are conducting focus groups with community members. To date, we have completed 3 focus groups (n=20); 35% are African American, 55% are Hispanic; 25% do not have frequent internet access; 65% have a personal or family history of type 2 diabetes. The focus groups are being recorded and transcribed for content analysis. Preliminary findings indicate that participants understand genetics is linked to family history, and are interested in learning more. Positive attitudes towards genetics research, and mixed views regarding genetic testing of children, were expressed. Personal experience of genetic testing was limited. In Phase 2, investigators and community partners will develop and conduct a survey to examine community attitudes towards genomics and information needs on a larger scale. In Phase 3, the community consultants, and findings from the formative research will inform outreach efforts and the development, refinement and evaluation of genomics educational materials designed to address diverse community information needs. The materials will be made available for use in future personalized genomics research and general public genomics education.