The Foundation will fund four new research projects from the Spring 2026 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.
Shared Decision-Making for College Athletes at Elevated Cardiovascular Risk: Ethical Tensions, Institutional Pressures, and Pathways to Trustworthy Care
Christine Baugh, PhD (University of Colorado)
Abstract: Athletes diagnosed with cardiac conditions and at elevated risk for sudden cardiac arrest face complex decisions about whether to continue competitive sports participation. Recent consensus is that this decision should be made through a shared decision making (SDM) process. However, key ethical tensions alongside complex informational and environmental challenges make implementation of SDM in this context uniquely challenging. Using innovative values and preference elicitation methods, this project aims to understand and improve SDM for athletes at elevated cardiovascular risk.
The Pediatric Vaccine Encounter in a New Era: Identifying and Mitigating Ethical Challenges
Mara Buchbinder, PhD (University of North Carolina at Chapel Hill)
Abstract: Recent changes to state and federal vaccine policies raise pressing ethical challenges for pediatricians. Drawing on interviews with 60 pediatricians from 3 US states, the team will seek to: 1) investigate ethical challenges faced by pediatricians navigating an evolving vaccine policy landscape, and 2) develop empirically driven solutions. This project aims to address an important bioethics problem with significant implications for maintaining child and public health and safeguarding trust in medicine. Outcomes seek to inform evidence-based recommendations for responding to changes in vaccine policies.
Implementation of ethics guidelines by stem cell research oversight committees
Kate MacDuffie, PhD (Seattle Children’s Research Institute)
Abstract: Research with human pluripotent stem cells has developed dramatically over the last two decades and is poised to have an even larger influence as many governments across the globe are taking efforts to minimize animal research. This project aims to determine whether existing ethics guidelines for stem cell research are being effectively implemented by committees responsible for stem cell research oversight at US institutions and develop a strategy for bolstering the oversight system to be able to more nimbly respond to ethically challenging stem cell research in the future.
Ethical Framework for n-of-1 Clinical Trials of Genome Editor Therapeutics for Personalized, Single-Dose Therapies
Debra Mathews, PhD (Johns Hopkins University)
Abstract: While n-of-1 trials (clinical trials conducted in a single patient) are not new, their use in CRISPR-based trials of rare genetic disease is novel and poised to become a viable option for many patients over the next decade. Existing guidance for n-of-1 trials is largely designed around drug trials and lacks meaningful integration of public perspectives. This project seeks to solicit the perspectives of patients/caregivers, clinicians, scientists, and bioethicists regarding the design and conduct of such trials, and convene these actors to co-develop ethical guidance for their design and conduct.
