Bioethics of Minority Participation in Research: Opportunities and Challenges

Background: Representation of minorities in public health and biomedical research lags behind whites. According to the NIH, “Religious, spiritual and cultural beliefs are among the barriers to increased participation. These beliefs and obstacles are further intensified by the legacy of the most infamous biomedical research study - the Tuskegee Syphilis Study - which hovers like a dark cloud over many racial and ethnic minority populations. It is perhaps the greatest dissuading factor to enroll in clinical research for many members of those communities.” This presentation will introduce the National Bioethics Infrastructure Initiative: Building Trust Between Minorities and Research. It is the most comprehensive research and training campaign ever undertaken in the nation. Methods: This presentation introduces the social and historical themes for the study: 1) milestones in minority participation in research; 2) the 1997 Presidential Apology for the Syphilis Study Done at Tuskegee and establishment of the Tuskegee University Center on Bioethics in Healthcare, the Tuskegee Human and Civil Rights Multicultural Center and the NIH mentored career scientists awards designed to increase the number of minorities engaged in bioethics; 3) the role of IRBs and investigators in response to NIH policy mandating the inclusion of women and minorities in research; and, 4) literature on biological and behavioral factors driving the need for minority participation in research and exposing cultural and religious barriers to the engagement of minority populations in clinical trials. Conclusion: Bioethics provides effective tools in the armamentarium public health professionals need to address racial and ethnic health disparities.