The Foundation will fund five new research projects from the Spring 2025 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.
Reducing Bias and Fostering Respect for Patients as Persons: The Promise of Humanizing Medical Records
Mary Catherine Beach, MD (Johns Hopkins University)
Abstract: Dehumanization—characterized by a self-perpetuating cycle of de-individuation, objectification, empathy reduction, and moral disengagement—is endemic in healthcare settings. With this proposal, Dr. Beach and the research team will seek to test the compelling hypothesis that inclusion of humanizing language in electronic health records can serve as a structural adjustment directly responsive to the psychological processes underlying dehumanization. Because every patient encounter is documented in the EHR, they hope this discovery has a profound impact on reducing bias and dehumanization in healthcare.
Challenging Fear of Anaphylaxis: An Ethical Framework for Implementing Oral Food Challenges in Allergy Clinical Practice
Jill Fisher, PhD (University of North Carolina at Chapel Hill)
Abstract: This project aims to improve food allergic children’s quality of life by developing ethical and implementation frameworks to conduct oral food challenges in clinical practice settings. Caregivers’ fear of anaphylaxis can result in unwarranted restrictions on a child’s activities that raise important bioethics issues related to the child’s best interests. Ethical and safe food challenges in a controlled, clinical environment can improve children’s well-being by educating caregivers about food allergy risks and empowering them to manage future allergic reactions.
Identifying Equity Priorities for Xenotransplantation Human Clinical Trials
Laura Kimberly, PhD (New York University Grossman School of Medicine)
Abstract: Prof. Kimberly and colleagues seek to explore the equity-related values, priorities, motivations, and understandings of people with end-stage kidney disease who are most likely to be eligible for xenotransplant clinical trial participation, the perspectives of their care partners, and of clinician-researchers who are positioned to influence trial design and participate in trial recruitment. This project aims to produce much-needed empirically grounded bioethics guidance to ensure equity considerations are incorporated proactively as xenotransplant human clinical trials are initiated.
Should Patients Participate in Organ Transplant Selection Committee Meetings?
Aditya Pawar, MD (Beth Israel Deaconess Medical Center)
Abstract: For a patient to receive an organ transplant they must go through an evaluation at a transplant center. A committee comprising transplant care team members decide who qualifies for transplant. Patients or their caregivers are not included in these meetings. This project seeks to explore whether including patients in selection meetings improves transparency, trustworthiness, and fairness of the transplant evaluation process among patients.
User Fees and the Food and Drug Administration: Deliberation, Transparency, and Public Trust
Jason Schwartz, PhD (Yale University)
Abstract: This project aims to critically examine the development of user fee legislation for the U.S. Food and Drug Administration (FDA) through the reauthorization of the Prescription Drug User Fee Act (PDUFA). Through document analysis and key informant interviews, Prof. Schwartz and colleagues will seek to examine ethical issues related to deliberation, public participation, and transparency in the PDUFA reauthorization process and its outcomes. The team aims to develop recommendations for how FDA and Congress can undertake this work in ways that enhance trust in the FDA and advance its critical work promoting public health and the public good.
