Distrust, Race, and Research: Overcoming Barriers to Recruitment and Retention of Minority Populations addressed historical and contemporary barriers to involvement of minorities in research. The primary goal of this session was to focus on solutions that are culturally relevant and scientifically sound.
The webinar presented:
- Lessons learned from selected cases of research abuse involving racial and ethnic minority populations
- Background and context of the U.S. Public Health Service Syphilis Study at Tuskegee, the subsequent presidential apology, and NIH supported research initiatives designed to repair the damage caused by this study
- The National Bioethics Research Infrastructure Initiative: Building Trust Between Minorities and Researchers
- Preliminary data from a qualitative study of investigators, as well as survey data from institutional review board (IRB) members, IRB staff, and researchers
- A new conceptual model of the research continuum that serves as a viable framework for designing, implementing, and evaluating measures that aim to overcome barriers to minority recruitment
The topic of this webinar was relevant to researchers, research staff, IRB members, and anyone working with human research protections programs (HRPPs) and IRBs.
Stephen B. Thomas, PhD
Dr. Stephen B. Thomas is the Associate Dean for Diversity at the Graduate School of Public Health and the Inaugural Philip Hallen Professor of Community Health and Social Justice in the Department of Behavioral & Community Health Sciences at the University of Pittsburgh. One of the nation’s leading scholars in the effort to eliminate racial and ethnic health disparities. He is principal investigator of the Research Center of Excellence on Minority Health Disparities in the Graduate School of Public Health, funded by the NIH-NCMHD. He is also principal investigator of the NIH National Bioethics Infrastructure Initiative: Building Trust Between Minorities and Researchers awarded in 2009. Dr. Thomas has been recognized at the national level for his professional accomplishments, receiving the 2005 David Satcher Award from the Directors of Health Promotion and Education for his leadership in reducing health disparities through the improvement of health promotion and health education programs at the state and local levels and the 2004 Alonzo Smyth Yerby Award from the Harvard School of Public Health for his work with people suffering the health effects of poverty. Over the years, his work is recognized as one of the scholarly contributions leading to the 1997 “Presidential Apology to Survivors of the Syphilis Study Done at Tuskegee”. Dr. Thomas has served on numerous national committees, including, but not limited to, the NIH State of the Science Committee on Tobacco Cessation, Prevention and Control; the National Research Council committee on Assessing Fitness for Military Enlistment: Physical, Medical and Mental Health Standards; the Institute of Medicine Committee on Reducing the Odds: Preventing Perinatal Transmission of HIV and the Centers for Disease Control and Prevention’s Agency Wide Research Agenda Collaborative. Dr. Thomas serves on the advisory board for the Mayo Clinic’s Cancer Center and Mayo’s Center for Translational Science Activities. He is the training site director for the Kellogg Health Scholars Post-Doctoral Program at the University of Pittsburgh. His work has been published in leading peer reviewed journals such as the Journal of the American Public Health Association, Social Science and Medicine, Health Promotion Practice and Archives of Internal Medicine.
Sandra Crouse Quinn, PhD
Dr. Sandra Crouse Quinn is a Professor in the Department of Behavioral and Community Health Sciences, and Director of the Peace Corps Master’s International Program at the Graduate School of Public Health, University of Pittsburgh. She is the Principal Investigator on the Bioethics Research Infrastructure Initiative, Building Trust between Minorities and Researchers, funded by the National Center for Minority Health and Health Disparities (NCMHD), NIH. In addition, Dr. Quinn serves as the Co-Principal Investigator on a five year Research Center of Excellence on Minority Health Disparities also funded by the NCMHD, NIH. She is also the Co-Principal Investigator on a 5 year, CDC funded Preparedness and Emergency Response Research Center, Public Health Adaptive Systems Studies, which focuses on public health systems’ capacities to respond to disasters and emergencies. In the PHASYS Center, her specific focus is on risk communication and vulnerable populations. Dr. Quinn is also the Principal Investigator on a longitudinal national study of public attitudes toward H1N1 conducted over 2009-2010 in which she is studying disparities affecting specific populations, trust and willingness to accept H1N1vaccine and drugs under an Emergency Use Authorization. She was the Principal Investigator on a recent CDC funded study on communication between postal workers and public health professionals during the 2001 anthrax attack. Her research interests include the legacy of the Tuskegee Syphilis Study; engagement of minority and marginalized communities in research; community advisory boards; and risk communication in emergencies and disasters with a specific focus on minority populations. Dr. Quinn recently served as the guest editor of a theme issue on emergency risk communication and pandemic influenza for the journal, Health Promotion Practice. She serves on the editorial board of Health Education & Behavior for which she was a guest editor on a 2006 theme issue on health disparities and the editorial advisory boards of Health Promotion Practice and Family and Community Health.