Creative approaches to developing and disseminating culturally appropriate genetics health education information to African American communities

The National Human Genome Center's (NHGC) GenEthics Unit at Howard University (HU) was instituted to address the ethical, legal, and social implications (ELSI) of genetic research and to facilitate the participation of the community in genetics-related research, education and policy. A Community Partnership Program (CPP) was strategically established to encourage dialogue and maintain rapport with key organizations and individuals who have deep roots in the surrounding African American community. The CPP endeavors to bridge the divide between research and general communities with the overall goal and mandate of eliminating health disparities by building awareness about, and stimulating interest in genetic research, health and wellness.

In 2000, HU received funding from March of Dimes and HRSA to increase the awareness and knowledge of genetics for the African American community in metropolitan Washington DC, as part of the Consumer Genetics Education Network (CGEN) Project. Needs assessments had revealed significant interest in genetics and ELSI-related issues in the community through more interactive educational approaches. To meet this need, HU actively engaged community representatives of the CPP to develop and implement interactive educational workbooks and multimedia public service announcements (PSAs) on the topics of family health history and race and genetics. Materials were disseminated through local media, community forums and workshops with CPP members, and regional, national institutions such as the Joint Center for Political and Economic Studies. Increasing genetic literacy among African Americans will increase their capacity for better informed healthcare decisions, advocacy for access to genetics services, and achievement of health equity.