The Foundation will fund five new research projects from the Spring 2021 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 80 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.
Enabling Ethical Analysis and Public Justification in State-Level Pandemic Responses in the United States
Anne Barnhill, PhD (Johns Hopkins University)
Abstract: During the COVID-19 pandemic, state governments adopted policies that profoundly affected personal and public life, in some cases imposing costs, curtailing freedom and exacerbating inequities. It’s often claimed that such high-stakes policy decisions should be ethically assessed, should account for the diverse perspectives and values held by the public, and should be clearly explained and justified to the public. This project aims to improve the frequency and quality of such activities by creating ethics guidance and tools that are fine-tuned to real-world pandemic policy-making contexts.
The Ethics of Implementing Coronavirus Vaccines: Independence, Transparency, and Social Confidence
Jonathan Darrow, SJD, LLM, JD, MBA (Brigham and Women’s Hospital)
Abstract: Vaccines represent one of the safest and most effective public health interventions, yet public skepticism and vaccine hesitancy remain high. The lack of trust in public institutions and the medical products they regulate limits the ability of government to facilitate widespread vaccination, even in times of national health emergency. Prof. Darrow and his team will seek to understand the causes of vaccine hesitancy and recommend changes to agency structure and information dissemination practices that would increase trust in government institutions and the products they regulate.
Understanding perspectives on genomic research in an ethnically and racially diverse cohort of parents
Ingrid Holm, MD, MPH (Boston Children’s Hospital)
Abstract: This project addresses the bioethical problem of health disparities resulting from under-representation of ethnic and racial minorities in genomic research that informs the integration of genomic sequencing into newborn screening (NBS). The aims are to explore the views of minority parents on enrolling their child in genomic research and on the use of genomic sequencing in NBS. This project is significant as it will lead to strategies for enrolling families from diverse communities in genomic research, and to recommended policies on the equitable integration of genomic sequencing in NBS.
Ethics in the Interim: Learning from the COVID-19 pandemic to develop ethical guidance for data and safety monitoring committees overseeing clinical trials
Seema Shah, JD (Ann & Robert H. Lurie Children’s Hospital of Chicago)
Abstract: The COVID-19 pandemic has revealed major gaps in research oversight, particularly regarding data and safety monitoring boards (DSMBs). DSMBs dynamically integrate uncertain information to determine whether to prematurely stop or otherwise modify trials. This makes DSMB ethics conceptually interesting as well as operationally challenging. Taking a mixed-methods approach, this project proposes to develop a pragmatic ethical framework and model charter to explicitly address the ethical considerations embedded in DSMB determinations, including in contexts of rapidly evolving evidence and policy.
Developing Practical Recommendations for Precision AI-enabled Clinically Embedded Research (PACER)
Justin Starren, MD, PhD (Northwestern University)
Abstract: The COVID pandemic has underscored two pre-existing issues: 1) minority groups are underrepresented in clinical research; and 2) traditional clinical research is too slow to address rapidly evolving situations. This project assesses the ethical implications, from the perspectives of relevant stakeholders, of new artificial intelligence-based research models that allow real-time, large-scale, low risk, community-based research; and, will develop and disseminate an empirically-guided framework with practical implementation recommendations based on ethical principles and pragmatic experience.