Making A Difference Grantees, Fall 2016
We are pleased to announce the Fall 2016 Making A Difference awards
Barbara Bierer, MD (Brigham & Women’s Hospital)
A System for Academic Recognition of Data Generators
Researchers may spend years running clinical trials and collecting data and currently receive no recognition for sharing that data in a way that other researchers can use. This project addresses how to ensure that those researchers receive appropriate recognition and credit for making their data available to others. We propose a new idea of 'data authors,' individuals who would be responsible for data quality and accuracy, for protecting the privacy of participants, and for making that anonymous data available to others. We propose to work with universities and grant funders to develop a system that recognizes the effort. Taken together, this project will help to ensure that the data--and therefore the essential contributions of clinical trial participants--will be further used for the advancement of science and medicine.
Jeremy Sugarman, MD (Johns Hopkins University)
Addressing the Ethical Issues in HIV+ to HIV+ Organ Transplants
The HIV Organ Policy Equity Act now permits transplanting organs from HIV+ donors to HIV+ recipients. This project will examine the ethical issues faced by this novel practice in actual clinical settings so that such transplants are responsibly and appropriately performed. First, we will collect in-depth qualitative data from the early recipients of HIV+/HIV+ transplants as well as those patients living with HIV who are offered an HIV+ organ and refuse. In addition, we will survey patients living with HIV who are on an organ waitlist regarding their knowledge, attitudes and beliefs about HIV+ transplants. The aggregate data will be used to help create patient-reported outcome measures of ethics outcomes as well as a standardized informed consent process and guidance for independent recipient advocates. These tools will be implemented in a multicenter clinical trial and disseminated through peer-reviewed publications as well as professional conferences and networks.
Kevin Esvelt, PhD (Massachusetts Institute of Technology)
A Mutually Responsive Approach to Developing Technologies That Alter Shared Ecosystems
An emerging dilemma in bioethics concerns novel genome editing technologies capable of altering ecosystems. Such interventions, deployed in the shared space of the environment, should only be initiated if acceptable to the communities involved. But what does "acceptable" entail? By what process should scientists and communities jointly make decisions from the earliest stages of project planning? Working in the context of a nascent community-guided project to combat Lyme disease on the islands of Nantucket and Martha's Vineyard, this project will explore the reciprocity-based concept of "Responsive Science" as a model for community consent and decision-making during the development and real-world testing of novel ecological interventions.
Andrew White, MD (University of Washington Foundation)
Challenges and Opportunities Around the Oversight of the Aging Physician
As the physician workforce ages, physician leaders and healthcare organizations are increasingly encountering difficult questions about the best way to assess and manage doctors whose skill may have deteriorated with age. The current paradigm of professional self-regulation may not effectively serve the interests of patients, as some physicians may not recognize or respond when their care becomes unsafe. However, more assertive testing or retirement policies could infringe on physicians' rights to fulfillment and autonomy. Debates about this problem lack a clear understanding of the attitudes of key stakeholders coupled with insight into the ethical principles and norms that should govern oversight of aging physicians. We propose a project to identify the principles that drive current thinking about this issue through key informant interviews and focus group research. After analyzing our results, we would develop guidelines regarding the aging physician and work with stakeholders to identify strategies for implementing these guidelines.