The Foundation will fund three new research projects from the Fall 2023 cycle of its Making a Difference in Real-World Bioethics Dilemmas grant program.
The Making a Difference program funds bioethics research projects that seek to resolve current challenges in health care, policy, and research. Grants are awarded twice yearly. Since 2013, the Foundation has funded more than 100 Making a Difference grants supporting bioethics research on a wide array of issues including aid-in-dying, deception in medical contexts, discrimination in health care, and responses to the opioid epidemic, among others.
Ethical Challenges in Physician Advocacy and Organ Allocation Policies: Analysis of Exception Letters for Heart Transplantation
Prateeti Khazanie, MD (University of Colorado Denver Anschutz Medical Campus)
Abstract: The U.S. heart allocation policy changed in 2018 and significantly changed transplant programs’ practices. The use of exception requests for listing patients at the highest urgency statuses accelerated under the new system. These requests are almost universally approved and can serve as loopholes. Exceptions raise concerns about gaming and institutional/regional variability that threaten fair allocation. Dr. Khazanie’s project will utilize a uniquely available dataset to aim to: (1) understand current practices regarding exceptions, (2) identify key ethical concerns, and (3) develop policy recommendations.
Promoting High-Quality Ethics Review and Oversight of Psychedelic Research: Learning from Investigator Experience and IRB Perspectives
Holly Fernandez Lynch, JD (University of Pennsylvania)
Abstract: Amid today’s psychedelic renaissance, more IRBs will find themselves responsible for oversight of psychedelic research. In this gatekeeping role, IRBs must ensure appropriate participant protection without inhibiting important science. Yet neither IRB perspectives on psychedelic research nor psychedelic investigator experiences with IRBs have been studied. Through interviews with psychedelic investigators and a survey of IRB chairpersons, Prof. Lynch’s project aims to promote high-quality ethics review of psychedelic research by developing empirically informed resources for both IRBs and investigators.
Prenatal Diagnosis in the Post-Roe Era (PD-PRE)
Asha Talati, MD (University of North Carolina, Chapel Hill)
Abstract: This project will seek to develop ethical guidance for prenatal genetic testing after overturning of Roe v. Wade through interviews with patients and healthcare providers, and by conducting a normative ethical analysis. Data from this study will aim to identify how genetic counseling and prenatal screening practices have evolved post Roe, and describe strategies used by patients and providers to adjust healthcare in the context of new laws. Using an ethical analysis and reviewing results with an expert panel, Dr. Talati’s project seeks to generate recommendations to inform ongoing ethical prenatal genetic practice.
