Consumer Genetics Education Network (CGEN): Lessons Learned in the Participatory Development of Culturally Appropriate Interventions

Objectives: To share challenges and lessons learned related to a multi-site project that develops, tests, and disseminates culturally-appropriate consumer genetic education materials and interventions. Background: With genetics advances, there is new information crucial for early detection of and intervention related to genetic conditions. Disadvantaged racial and ethnic minority communities are not benefiting from these advances. In 2005, the Health Resources and Services Administration funded a cooperative agreement with the March of Dimes (MOD), who engaged four local partners targeting African Americans, Latinos/Dominicans, Chinese, Koreans, and Pacific Islanders. Outcomes are to increase: (1) genetic literacy allowing people to make informed health and genetics-related decisions; (2) access to and use of culturally appropriate programs; and, (3) health risk-reducing lifestyle changes. Methods: This project is guided by a participatory approach that calls for active and meaningful participation among national partners, local CGEN staff, consumers, and community-based organizations as well as a commitment to cultural, linguistic and health literacy appropriateness. Startup program activities, relationships between partners and communities, and other developmental factors were assessed. Data sources were progress reports, minutes, observations, e-mails, and qualitative interview transcriptions. Results: Collaborations that develop genetics education programs offer unique opportunities and challenges. Some sites progressed rapidly because of their readiness (community access, knowledge, experience and skills). Others faced delays related to developing new partners and responding to community input. MOD facilitated communication, technical support, training, and other mechanisms. Conclusions: Detailed upfront group planning with logic models may minimize “surprises” related to participatory processes, translation and cultural adaptation.