B. L. Jones,1 C. A. Vyhlidal,1 M. Brooks,2 M. Robinson,3 K. J. Goggin1; 1Children's Mercy Hospitals and Clinics, Kansas City, MO, 2Zion Grove MIssionary Baptist Church, Kansas City, MO, 3Black Healthcare Coalition, Inc., Kansas City, MO
BACKGROUND: African Americans (AA) remain under-represented in clinical trials. Historical injustices, such as the Tuskegee experiment and the recently revealed Henrietta Lacks’ story, may affect AA’s perceptions of research. As genetics is integrated into drug development, it is imperative to engage minorities in research. To facilitate this objective, we explored barriers to research participation among AA.
METHODS: We conducted a cross-sectional survey to explore the knowledge and beliefs regarding clinical and genetic research among AA. Surveys were administered to a convenience sample of adults at community events in an urban setting over 6 months. Descriptive data were summarized by frequencies for survey responses from the first 99 respondents.
RESULTS: Only 14% of respondents had ever been solicited for research; however, 93% of those who had been asked had participated (4% in genetic research). 92% of previous participants indicated a willingness to participate again vs. 35% of all respondents who indicated a willingness to participate in future research (19% not sure). 74% viewed participation as favorable regarding its potential to help others. Participation in research by those of different races was important to 64% and 63% believed that genetic research may be useful in identifying best treatments. 27% were concerned that researchers may not be truthful with participants and 54% were fearful of incidental discoveries in research.
CONCLUSION: Overall, AA have a favorable view of research, however, they are not being engaged in research. Initial engagement may improve future participation rates. Fear of research findings may also hinder AA participation. Effective interventions to address these barriers may lead to improved therapies and health outcomes among AA.