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

ABSTRACT

UNLABELLED 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.