Abstract: July 12, 2024 marks the 50th anniversary of the enactment of the National Research Act. The National Research Act was a response to public outcry that the federal government let hundreds of Black men in rural Alabama go untreated for syphilis for 40 years to study the impact of the disease on the human body. The Act included creation of federal rules to protect human participants in research. It also led to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to identify ethical standards to guide human research.
This program will reflect on what happened following the passage of the National Research Act, showcase the diverse role research participants play in contemporary research, and consider what future scientific advances may mean for research participants and public trust in research.
Noon – 12:15 pm
Opening Statement
12:15 – 12:50 pm
Reflections on the Work of the National Commission
Patricia A. King, JD
Professor Emerita, Georgetown Law
The Evolution of the Regulations for Human Research Protections and the Establishment of OHRP
Ivor A. Pritchard, PhD
Senior Advisor to the Director of the HHS Office for Human Research Protections
A Brief History of Public Responsibility in Medicine and Research (PRIM&R) – A Response from the Research Community
Ivy Tillman, EdD
Executive Director of PRIM&R
12:50 – 1:45 pm
Why I Participated in Research - A Participant’s Voice
Rey Calabrese
Former Research Participant and Current Research and Community Coordinator at Fenway Health
Participants as Investigators: Participatory Action Research and Community-Led Studies
Basaime Spate
Community Research Coordinator, Center for Justice Innovation
Respecting Cultural Values: Doing Research with Indigenous Populations
Karina L. Walters, PhD, MSW
Director, NIH’s Tribal Health Research Office (THRO)
Listening to the People: Community Ethics Review Boards
Ella Greene-Moton
Member of a Community Ethics Board in Flint, MI, and President of the American Public Health Association
Engaging the Community in Research: The Insight of an Investigator
Sergio Aguilar-Gaxiola, MD, PhD
Professor of Clinical Internal Medicine; Director, Center for Reducing Health Disparities (CRHD); Director, Community Engagement Program of the Clinical Translational Science Center (CTSC), University of California, Davis, School of Medicine
1:45 – 2:30 pm
Contemplating the Future
Panelists:
Jodi Halpern, MD, PhD
Chancellor’s Chair and Professor of Bioethics, UC Berkeley
Misha Angrist, PhD, MFA
Associate Professor of the Practice, Social Science Research Institute, Senior Fellow Duke Initiative for Science & Society, Visiting Associate Professor of the Practice, Sanford School of Public Policy
Lee McIntyre, PhD
Research Fellow, Center for Philosophy and History of Science, Boston University
Aaron F. Mertz, PhD
Director, Science and Society, Aspen Institute
Moderated by: Laura Ruse Brosch, RN, PhD, COL, AN, USA (ret)
Assistant Vice President for Research Initiatives and Compliance, Office of the Vice President for Research, Uniformed Services University of the Health Sciences
Sponsored by the US Department of Health and Human Services Office for Human Research Protection
Location and Address
Online