Welcome to the UNC Center for Bioethics
The Vermont Study of Aid-in-Dying investigates the implementation and cultural impact of Vermont’s “Patient Choice and Control at End of Life” Act (Act 39), enacted in May 2013. Due to the recent enactment of Act 39, and Vermont’s small size and the geographic proximity of key institutions, Vermont offers an unparalleled setting for documenting emergent responses to the law across multiple sites and actors (e.g. patients, caregivers, medical providers and administrators, activists, legislators). The study will yield descriptive information about how the legalization of assisted dying affects death, dying, and end-of-life care. It will also describe ethical challenges that assisted dying raises for clinical communication about end-of-life care and the patient-provider relationship. Ultimately, the goal of the study is to 1) provide information that can be used to enhance end-of-life communication and policymaking, and 2) contribute to anthropological understandings of the biomedical management of death.
The aim of this project is to develop a virtue ethical approach to biomedical animal research science. A virtue ethical approach to animal research has not yet been developed but the promise of this framework in addressing ethical issues arising within the practice of animal research is significant. In addition, philosophers writing on ethical issues in animal research rarely engage with animal researchers or inform their work by considering the practices of animal research as a science, but for any investigation of the moral and intellectual virtues of science, such engagement is crucial.
- A virtue ethical approach to animal research is well suited to address ethical issues internal to the practices of animal research
- Collaboration with animal researchers to understand, frame, and address the ethical issues internal to biomedical animal research science
The Second Wave Initiative, launched in 2009, is a collaborative academic effort to advocate for, and help find, ethically and scientifically responsible solutions for increasing our knowledge base for the treatment of pregnant women who face medical illness. In April of 2009, scholars from Georgetown, Johns Hopkins, and Duke held a two-day workshop to make progress in this challenging area. Supported by a Reflective Engagement grant from Georgetown, the outcome of the workshop identified barriers, articulated the costs of ignorance, and proposed consensus proposals that can immediately begin to make a difference in pregnant women’s health. Second Wave advocates have also worked over the summer with Members of Congress and their staffs to raise awareness of the issue. Those efforts resulted in inclusion of language in the House Committee Report accompanying the Fiscal 2010 Appropriations for the Departments of Labor, Health and Human Services and Education.
A collaboration between C:B Core Faculty member Stuart Rennie and colleagues at Stellenbosch University in South Africa has been awarded a grant from the Fogarty International Center of NIH to support research ethics education in Southern Africa. The Advancing Research Ethics training in Southern Africa (ARESA) program will promote responsible research in southern Africa by offering a postgraduate Diploma/Masters level educational program to health care and other professionals in research ethics and by developing a national network for Research Ethics Committee (REC) members. The Bioethics Unit at the University of Stellenbosch, South Africa and the UNC Center for Bioethics will strengthen and expand local and regional African capacity by developing a research ethics curriculum incorporating a broad range of ethical issues across the health research spectrum, including ethics of qualitative research, mental health research, genetic research with indigenous populations, and pediatric research.
This project investigates healthy volunteers’ patterns of participation in Phase I clinical trials, with particular attention to the differences among minority groups.
The project has four primary aims:
- Assess how participants’ perceptions of the risks and benefits of Phase I participation change over time
- Examine how participants make decisions regarding their participation in clinical trials – including continuing serial participation – and assess the consistency of their choices over time
- Document how participants’ self-reported behaviors (a) affect the validity of clinical trials and (b) increase and/or mitigate harm that could come from serial participation, including behaviors that have health benefits
- Compare participants’ perceptions, decisions, and behaviors across racial and ethnic groups
The goal of this working group is to investigate these complexities and uncertainties, drawing on the input and expertise of a diverse group of global HIV stakeholders. Throughout our project, we aim to:
- develop a theoretical framework about HIV cure research and early implementation using historical, conceptual and ethical data;
- determine HIV cure stakeholder perspectives on cure research and early implementation;
- develop an online forum to promote stakeholder engagement focusing on the social and ethical implications of HIV cure research.
Our three research sites—located in Cape Town, South Africa; Chapel Hill, USA; and Guangzhou, China—give us an opportunity for powerful cross-cultural comparisons, which will help us us identify intersecting themes about unintended implications of HIV cure. This work will provide a strong foundation for subsequent HIV cure research and early implementation around the world.
With funding from the National Institute of Allergy & Infectious Diseases (NIAID), Dr. Jill Fisher is conducting a research study on pediatric clinical trials for food allergies, focusing primarily on peanut allergy. Using ethnographic research methods, the project investigates the on-the-ground ethical challenges that emerge in these clinical trials. In particular, the project explores how stakeholders—investigators, caregivers, adolescents, patient advocates, FDA officers, and pharmaceutical company representatives—define and understand acceptable risks and benefits from food allergy treatments, both in terms of research protocols and the eventual products to be used in clinical practice. The empirical findings from the project will be mobilized to develop a framework for the ethical conduct of peanut allergy clinical trials that attends to the myriad interests that drive biomedical research, including the search for therapies that meaningfully improve the lives of children with food allergies, the need to design and conduct clinical trials to meet the regulatory standards required by the FDA for the approval of products, and the commercial context in which investigators and companies have financial conflicts of interest that motivate the successful development of new therapies. Collaborating with Dr. Fisher on the project are Drs. Anne Drapkin Lyerly and Edwin H. Kim.
In this study, researchers are examining the ways in which five sets of key interpreters understand PGM as a biomedical goal, in order to anticipate the ethical and social challenges they could provoke:
- Individual scientists and labs who invoke the goal in NIH grant applications;
- The institutional sponsors and public policy proponents of the concept, including patient advocacy groups;
- PGM’s funding, regulatory, and editorial gatekeepers, medical educators and clinicians already working under this rubric, and the “early adopters” of PGM services amongst consumers and patients.
There has been a good bit of discussion of the challenges involved in attempting to roll out PGM within the social context of our health care system. This study is aimed at exploring the challenges that could flow from the intrinsic axiological commitments of PGM itself, i.e. the values that drive and shape the enterprise.
This training project seeks to increase awareness of ethical issues in biomedicine in Francophone Africa, and contribute to locally relevant bioethics education and practice in the region. The project conducts workshops, organizes conferences, provides training in bioethics for local collaborators and interested scholars, publishes peer-reviewed articles on bioethical issues in Francophone Africa, and integrates bioethics content into existing curricula in key educational institutions. The target countries for our initiatives are the Democratic Republic of Congo (DRC) and Madagascar. Strengthening Bioethics Capacity and Justice in Health is a collaborative project among leading health institutions in the United States, Belgium, Madagascar and the DRC.
Re-Engaging Ethics is a project that is funded by the Greenwall Foundation. The purpose of this project is to create and disseminate recommendations for the review and conduct of community-engaged research, by engaging a diverse set of stakeholders in dialogue about the unique ethical concerns that arise in this emerging scientific approach to public health and biomedical research. While there has been some conceptual work in the peer-reviewed literature on the ethical issues that arise in engaged scholarship, the field is so new that there hasn’t been a comprehensive examination of these issues, nor have there been clear recommendations for review. In addition, much of what has been written has been from the perspective of the investigator or ethicist; few include the perspectives of community members as authors, and even fewer bring all of these perspectives to bear in one set of recommendations. Our project seeks to remedy these issues by soliciting the varied perspectives of community, academic and ethics scholars through in depth interviews, questionnaires, workshops, and literature reviews, and developing a set of recommendations that address ethical issues in engaged scholarship.