June 2018

Making a Difference Grantees, Spring 2018

We are pleased to announce the Spring 2018 Making a Difference Awards.

Rebecca DeBoer, MD, MA (University of California, San Francisco)
2 years / $181,960

An Ethical Approach to Routine Tragic Choices: Radiotherapy Allocation in Rwanda

Radiotherapy (RT) is essential to effectively treat the most common cancers in low resource settings, yet there is a severe shortage of RT worldwide. Fair, principled systems for explicit rationing of this scarce but critical resource are needed. At Butaro Hospital in Rwanda, an oncology program supported by international partners is able to refer ten patients per month for RT. This project will develop an ethical approach to RT allocation at Butaro that can be applied broadly to other settings.

Raymond De Vries, PhD (University of Michigan)
2 years / $230,531

The Ethics of Electronic Fetal Monitoring: the intersection of ethics, law, and everyday medical practice

In spite of strong evidence showing it offers no clinical benefit and increases the likelihood of unnecessary cesarean delivery, Electronic Fetal Monitoring remains part of routine care given to nearly all patients in labor in the US. Using observations and interviews the research team will identify the barriers to the implementation of this evidence and organize a deliberative meeting with key stakeholders to translate the project’s findings into practical strategies for more ethical and judicious use of EFM.

Elizabeth Evans, PhD (University of Massachusetts, Amherst)
2 years, $128,164

Exploring Shared Decision-making as an Ethical Response to the Opioid Epidemic

Opioid epidemic responses have been developed without patients’ input, risking limited impacts, unfair benefits distribution, and erosion of public trust. The research team will empower opioid use disorder patients to consider with community stakeholders issues of shared decision-making and involuntary civil commitment and “big data” uses. They will recommend how to interact with patients responsibly, engender public trust, and balance individual rights and social goods.

Reshma Jagsi, MD, MPhil (University of Michigan)
18 months / $198,598

Public and Patient Perspectives Regarding the Ethics of Fundraising from Patients

Because health care institutions are increasingly reliant on philanthropic fundraising from grateful patients, it is essential to understand public and patient perspectives about the ethical considerations in this context, including privacy and confidentiality, patient vulnerability, and physicians’ conflicts of obligations.  The research team will conduct a survey to illuminate where current practices may diverge from public expectations, to focus deliberation on where policy changes may be needed.

Kenneth D. Marshall, MD, MA (University of Kansas Medical Center Research Institute)
2 years / $109,703

Revive, Refuse, Repeat: Informed Refusal and the Opioid Crisis

Patients suffering from illness stemming from opioid misuse and addiction frequently refuse care.  Providers who encounter these patients often find themselves caught between the need to respect patients’ autonomy, and the need to provide appropriate and potentially life-saving care. This project aims to characterize current provider understanding of the ethical issues involved in such clinical dilemmas and to provide ethical guidance on how to navigate them.

Nicole Martinez-Martin, JD, PhD (Stanford University)
18 months / $51,487

Ethical and Legal Challenges in the Use of Digital Phenotyping for Mental Health Applications

This project is a collaboration that aims to (1) identify and analyze ethical and legal challenges in the use of digital phenotyping for mental health applications, (2) identify how values are embedded in technology design (including data collection and the use of AI), (3) develop and establish best practices and implementation for industry, and (4) inform development of practical guidance for conducting ethical consultation as collaboration between bioethics scholars and industry.