Decisions to participate in fragile X and other genomics-related research: Native American and African American voices.

The lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases. OBJECTIVES: The purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions. METHODS: Eight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method. RESULTS: Themes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research. Conclusions: Community-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.