Research Ethics Reimagined

Disability, Inclusion, and Research Ethics With Nancy Olson, JD

In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the inclusion of individuals with disabilities in research with Nancy Olson, JD, IRB. Olson serves as an analyst at the University of Nebraska Medical Center and is the recipient of PRIM&R's 2024 Service Award. Drawing on more than two decades of experience in human research protections and her own lived experience as a person who became deaf, Olson discusses how assumptions about disability shape — and often limit — who gets to participate in research. She examines the responsibilities of both researchers and IRBs in designing accessible studies and calls for a shift from compliance-focused thinking to genuine participant-centered preparation.

Scientific Research for the Common Good with Alex John London, PhD

In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the philosophical foundations of research ethics and the challenges of deploying artificial intelligence in medicine with Alex John London, K&L Gates Professor of Ethics and Computational Technologies at Carnegie Mellon University, where he directs the Center for Ethics and Policy. Professor London discusses his book “For the Common Good,” which argues that justice should be the foundational principle of research ethics. Professor London also offers his assessment of AI's promise and limitations in healthcare.

The Promise and Perils of FDA’s New ‘Plausible Mechanism’ Pathway With Holly Fernandez Lynch, JD, MBe

In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore FDA's plausible mechanism pathway for ultra-rare genetic disorders with Holly Fernandez Lynch, Associate Professor of Medical Ethics at the University of Pennsylvania's Perelman School of Medicine. She discusses how this pathway enables personalized gene therapies for N-of-one or N-of-few diseases while raising important questions about regulatory process, evidence standards, and equitable access. Professor Fernandez Lynch also examines the remarkable case of baby KJ, who received a gene editor to treat his urea cycle disorder, and considers both the transformative potential and the procedural concerns surrounding FDA's approach.

Ethical Challenges in Suicide Research With Matthew Nock, PhD

In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the ethical and methodological complexities of suicide and self-harm research with Matthew Nock, PhD, the Edgar Pierce Professor of Psychology at Harvard University and former chair of the Harvard IRB. Dr. Nock discusses how research demonstrates that asking about suicide does not increase risk, the importance of IRB-researcher collaboration, and the challenges of real-time monitoring and intervention with high-risk participants. He shares insights from developing consensus guidelines on ethical conduct of suicide research and emphasizes the critical need for advancing this often-stigmatized field of study.

When Research Ends Abruptly: Preparing for Study Terminations With Brandon Brown, MPH, PhD

In this episode of PRIM&R's podcast, "Research Ethics Reimagined," we explore the unprecedented wave of federally funded research terminations affecting tens of thousands of study participants. Brandon Brown, MPH, PhD, is a Professor of Medicine at UC Riverside School of Medicine’s Department of Social Medicine, Population and Public Health and a Hastings Center Fellow. Dr. Brown discusses the ethical and practical challenges researchers and IRBs face when studies end suddenly due to funding cuts. He examines how IRBs and researchers can collaborate to develop guidance to ensure communication and transparency for impacted researchers and participants.