Luminaries Lecture Series
OHRP offers a series of lectures by esteemed individuals with thought-provoking insights on human subjects research protections. Many of these lectures are recordings of keynote addresses at OHRP-sponsored Research Community Forum (RCF) events that take place approximately three times a year at locations across the United States. These presentations are informative and serve as a helpful resource to all professionals that conduct human subjects research or strive to protect the individuals that volunteer to participate in research.
The opinions expressed in the videos are those of the speakers. They do not necessarily reflect the views of the Office for Human Research Protections or the U.S. Department of Health and Human Services.
These videos are also listed on the OHRP YouTube Playlist.
Available recordings include:
Julia Lane, Ph.D., delivered the keynote address at the OHRP Research Community Forum co-sponsored with Hackensack University Medical Center in New Jersey. Her presentation explored the challenges of preventing re-identification of individuals represented in large datasets while maintaining the utility of the information for research purposes. Dr. Lane is a professor at the Center for Urban Science and Progress (CUSP) at NYU’s Wagner Graduate School of Public Service, and serves as a Provostial Fellow for Innovation Analytics and a Senior Fellow at NYU’s GovLab where she is helping to build the CUSP Data User Facility. (April 5, 2017)
Stuart L. Goldberg, M.D., delivered a plenary presentation at the OHRP Research Community Forum co-sponsored with Hackensack University Medical Center in New Jersey, on the exciting opportunities of tailoring and maximizing value in cancer care through effective data-mining and management. Dr. Goldberg is hematologist/oncologist and Chief Medical Officer of COTA (Cancer Outcomes Tracking and Analysis), and a member of the Executive Steering Committee of the Simplicity Trial, the largest observational database for chronic myeloid leukemia.
Watch: The Impact of Personalized Medicine for Cancer Patients through Big and Small Data [35:41]
Benjamin E. Berkman, J.D., M.P.H., gave a plenary address at the OHRP Research Community Forum co-sponsored with Hackensack University Medical Center in New Jersey in April 2017. His presentation addressed various aspects of individuals’ choice whether to receive information about genetic incidental findings that might arise in clinical care or research, and ethical considerations related to whether individuals have an absolute right not to know such information. Mr. Berkman is the Deputy Director of the NHGRI Bioethics Core and faculty member in the NIH Department of Bioethics, where he serves as the head of the section on the ethics of genetics and emerging technologies.
Camille Nebeker, Ed.D., M.S., gave the keynote address at an OHRP sponsored RCF in Hartford, Connecticut, speaking about the ethical use of personal health data and data from mobile technologies in research. Dr. Nebeker is an Assistant Professor of Behavioral Medicine, Family Medicine, and Public Health in the UC San Diego School of Medicine.
Watch: Connected and Open Research Ethics: Ethical Research Using Personal Health Data [52:01]
Ivor Pritchard, Ph.D. is Senior Advisor to the Director at OHRP. Dr. Pritchard’s plenary address at an OHRP-sponsored Research Community Forum in October, 2016 discussed how human research regulations pertain to social media and internet research, and how changing conceptions of privacy impact the ethics of research using social media and the internet.
Watch: Regulating Social Media and Internet Research: Public, Private, or What? [57:45]
Mark Barnes, J.D. is a Partner at Ropes and Gray LLP, faculty co-chair of the Multi-Regional Clinical Trials Center at Harvard and Brigham and Women’s Hospital, and lecturer at Yale Law School and Yale School of Medicine. Mr. Barnes gave a plenary presentation at an OHRP sponsored RCF in Hartford, Connecticut addressing the contradictory regulatory requirements of the Clinical Laboratory Improvement Amendments (CLIA) and the Health Insurance Portability and Accountability Act of 1996 (HIPAA) as they relate to disclosing actionable incidental findings to research participants, and attempts to reconcile their requirements.
Richard Gorman, M.D. is the Associate Director for Clinical Research at the Division of Microbiology and Infectious Disease at the National Institute for Allergy and Infectious Disease at NIH. Dr. Gorman gave the keynote address at an OHRP sponsored RCF in June 2016, on the design and conduct of clinical trials, the potential biases and errors, and examples of methods to reduce and eliminate bias and mismanagement.
Celia B. Fisher, Ph.D. is the Marie Ward Doty University Chair in Ethics and Professor of Psychology at Fordham University. Dr. Fisher gave the keynote address at an OHRP sponsored Research Community Forum in April 2016 in Miami, Florida. Her presentation discussed ethical challenges and regulatory considerations in research with vulnerable and marginalized at-risk adolescent populations.
Watch: Ethics & Social Justice in Health Research Involving Vulnerable Adolescents [49:48]
Reflecting on his 30 years as Director of the National Institute of Allergy and Infectious Disease, Anthony Fauci, M.D. speaks at PRIM&R about historical issues at the intersection of science, medicine, bioethics, policy, and politics. He recalls some of the difficult choices faced in the early years of the HIV/AIDS epidemic and connects them to current issues, including concerns around the Ebola vaccine.”
Dr. Fauci appeared as a keynote speaker at PRIM&R’s 2014 Advancing Ethical Research Conference. For more information about the Conference and PRIM&R, visit http://www.primr.org.
Watch: Addressing the HIV/AIDS Pandemic: Ethical Challenges [43:28]
Oral History Collection
This collection includes interviews conducted in 2004 with members and staff of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Transcripts of these interviews are available as well.
Content last reviewed on March 4, 2016
