222827 Bioethics of Minority Participation in Research: Opportunities and Challenges

Tuesday, November 9, 2010 : 4:30 PM - 4:42 PM

Stephen B. Thomas, PhD , Department of Behavioral and Community Health Sciences & Research Center of Excellence on Minority Health Disparities, Graduate School of Public Health, University of Pittsburgh, Pittsburgh, PA
Sandra C. Quinn, PhD , Department of Behavioral and Community Health Sciences & Research Center of Excellence on Minority Health Disparities, University of Pittsburgh, Graduate School of Public Health, Pittsburgh, PA
James Butler III, DrPH, MEd , Department of Behavioral and Community Health Sciences & Research Center of Excellence on Minority Health Disparities, University of Pittsburgh, Graduate School of Public Health, Pittsburgh, PA
Craig S. Fryer, DrPH, MPH , Department of Behavioral and Community Health Sciences & Research Center of Excellence on Minority Health Disparities, University of Pittsburgh, Graduate School of Public Health, Pittsburgh, PA
Mary A. Garza, PhD, MPH , Behavioral and Community Health, University of Maryland for Health Equity School of Public Health, University of Maryland College Park, College Park, MD
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.

Learning Areas:
Diversity and culture
Ethics, professional and legal requirements
Other professions or practice related to public health
Public health or related education
Public health or related laws, regulations, standards, or guidelines
Public health or related research

Learning Objectives:
By the end of the session, each participant will be able to: 1.Describe historical factors leading to the development of human subjects protections and federal mandates for inclusion in research; 2.Describe the current status of participation of minorities in research; and 3.Describe the Bioethics Infrastructure Initiative activities and implications for improving minority participation in research.

Keywords: Bioethics, Minority Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the Principal Investigator for the study
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.