Empowering underserved communities to reduce health risks through the development of community-based genetics education programs

The Community Genetics Education Network (CGEN) project, a collaborative agreement between the March of Dimes and the Health Resources and Services Administration, addressed the need to increase genetic literacy in underserved communities in order to promote more informed health-related decision-making, increase dialogue with healthcare providers, and increase adoption of healthier lifestyles. Underserved populations suffer disproportionately from many common diseases. As genetic and genomic advances change our understanding of common disease, it has become even more imperative to ensure that people have a basic understanding of the role of genetics in these conditions.

Four sites, using community-based participatory approaches, developed, implemented, evaluated, and disseminated culturally and linguistically tailored genetics education programs for school, clinic, and community settings. Each site developed materials based on community needs assessments. The result was four population-specific educational interventions with some common themes, such as family health history, and the interaction of genetics and the environment (including lifestyle). All projects facilitated individual and/or community empowerment by enabling individuals to acquire knowledge and develop skills to understand their risk for genetic conditions and common complex disorders and to take action and use this knowledge when interacting with health care professionals. Community capacity was built through train-the-trainer programs on genetics.

The presentation will discuss how the project fostered collaboration and partnerships. We will also describe strategies for empowerment, provide final project evaluation findings including participant satisfaction and knowledge and behavior change, describe the diverse dissemination efforts, and end with implications for other health education efforts.