RESUMO
The authors identified the key characteristics of the Jackson Heart Study Community Outreach Center as it worked to embed a sustainable, positive impact on the surrounding communities by engaging community partners to facilitate the mission of the Jackson Heart Study. This report provides an overview of the practice and infrastructure.
Assuntos
Negro ou Afro-Americano , Doenças Cardiovasculares/etnologia , Centros Comunitários de Saúde/organização & administração , Medicina Comunitária/organização & administração , Relações Comunidade-Instituição , Estudos Longitudinais , Humanos , MississippiRESUMO
The Jackson Heart Study (JHS) convened focus groups to engage the community in dialogue on participation in the National, Heart, Lung and Blood Institute's Candidate Gene Resource (CARe) project. CARe, a genome wide association and candidate gene study, required the release of participant phenotypic and genotypic data with storage at NIH for widespread distribution to qualified researchers. The authors wanted to assess the willingness of an African American community to participate in the genetics research, given the past history of bioethical misconduct in ethnic minority communities. The discussion produced the following specific issues of interest: reasons for participants' interest in genetics research; participants' knowledge about the JHS; and participants' knowledge about genetics research and its advantages and disadvantages. Training on genetic issues was also developed for the JHS community and staff.