The Foundation will fund five new research projects from the Spring 2022 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 90 Making a Difference grants supporting bioethics research on a wide array of issues including aid-in-dying, deception in medical contexts, discrimination towards minority clinicians, and responses to the opioid epidemic.
Exploring Decision-Making about Participation in an Industry-Sponsored in vivo Gene Therapy Clinical Trial for Fabry Disease
Alison Bateman-House, PhD (New York University)
Abstract: Conducting qualitative interviews with adults who made a decision about participating in an industry-sponsored gene therapy (GT) clinical trial for Fabry disease, Dr. Bateman-House and her team will seek to add to our understanding of GT trial decision-making novel insights concerning 1) industry-sponsored GT trials, 2) GT trials for conditions for which approved treatment options exist, and 3) alignment between participants’ initial understandings/perceptions and their experience. The team’s long-term goal is to develop evidence-based recommendations for supporting patient decision-making and informed consent in GT trials.
From transparency to moral perception: Analysis of conflicts of interest arising from industry payments to advanced practice nurses and their practice networks
Quinn Grundy, PhD (University of Toronto)
Abstract: Conflicts of interest are a priority bioethics problem because they jeopardize trust and risk harm. Conflict of interest policy is historically physician-focused though advanced practice nurses have wide prescribing authority. Dr. Grundy and her team will analyze the first Open Payments data that will include advanced practice nurses. Taking a systems perspective, they will aim to make advanced practices nurses’ conflicts of interest visible, identify and describe networks of influence in which advanced practice nurses decide to receive industry payments, and generate a framework of the ethical values at stake.
Developing Practical Guidance for Integrating Sustainability and Conservation Ethics into Clinical Decision-Making
Andrew Hantel, MD (Dana-Farber Cancer Institute)
Abstract: The mortality cost of climate change due to healthcare is substantial. Data showing the impact of clinical decisions on the climate pose novel ethical questions to patients and clinicians about their environmental obligations and autonomy. Using a mixed-methods approach, Dr. Hantel and his team will solicit patient and clinician views on clinical decision-making in relation to sustainability and conservation. They plan to map findings to Jonsen and Siegler’s Four Topics of Clinical Ethics to develop and disseminate practical guidance for integrating the ethics of sustainability and conservation into clinical care.
Dilemmas of health equity in global health research: A study of research on climate-sensitive infectious disease
Maria Merritt, PhD (Johns Hopkins University)
Abstract: How can global health researchers and their institutional networks best act as responsive partners to communities dealing with the injustices of poverty and climate change? Dr. Merritt and her team will aim to explore new opportunities for researchers to build partnerships with communities. Their project focuses on researchers working with communities where climate change threatens to increase infectious disease burdens. The team will produce an ethical analysis and a description of researchers’ views and experiences.
Bioethics in Community Health: Understanding Ethical Challenges of Community Health Centers
Carolyn Neuhaus, PhD (The Hastings Center)
Abstract: This national study of nonprofit community health centers in the United States will seek to describe the nature and extent of ethical challenges arising in primary care clinics serving diverse low-income communities facing health care barriers. Community health providers have few places to turn for bioethical analysis and guidance on the practice challenges that keep them up at night. Dr. Neuhaus and her team seek to cultivate and inform ongoing bioethics-community health collaboration that supports community health providers and advances trustworthy health care, inclusive research, and equitable health policy.