No More Excuses: Building Trust and Capacity through the Bioethics Research Infrastructure Initiative

Background: To date, the NIH mandate for inclusion of minorities and the regulatory responses to the protection of human subjects have not been sufficient to overcome lingering distrust, challenges, and other obstacles to the participation of minorities in research. Increasing minority recruitment and retention in biomedical and public health research rests on a comprehensive understanding of the factors that affect recruitment and retention from the perspectives of multiple stakeholders: researchers, IRBs, and community members. However, most research has focused on community members without understanding the perspectives of critical components of the research enterprise: IRBs, researchers and minority communities themselves. Methods: This presentation will draw upon both qualitative and quantitative results from the following: 1) an online survey (n=1500) of members of Public Responsibility in Medicine and Research and other NIH researchers; 2) qualitative interviews conducted with 30 investigators who work with minority communities; and, 3) a telephone survey of a national sample (n=3,000) of African Americans and Hispanic Americans. Results: The presentation will summarize common themes across these three data collection efforts, including, but not limited to issues of trust, research team composition, best practices in recruitment/retention, and challenges encountered. Conclusions: The presentation will focus on the next steps needed to inform curricula development for communities and research investigators. These curricula products will aim to strengthen the capacity of investigators and communities to effectively work together for the purposes of increasing participation of minorities in research.