Advancing bioethics as collaborative craft in an interdependent world
The PHASES Working Group has released new guidance, “Ending the evidence gap for pregnant women around HIV & co-infections: A call to action.” The Ethics Guidance is the pinnacle product of the seven year, NIH funded PHASES Project (Pregnancy and HIV/AIDS: Seeking Equitable Study), led by Principal Investigator Anne Drapkin Lyerly, MD, MA, professor of social medicine and associate director of the Center for Bioethics. It is authored by the interdisciplinary and international PHASES Working Group. Informed by deep engagement with the HIV research community as well as qualitative research with pregnant women living with or at risk for HIV, the Guidance provides concrete and actionable recommendations to clear an ethical pathway forward for timely, needed, responsible research to improve the health and safety of women and the children they bear.
The Center interprets “bioethics” as a broad domain of questions about ethical issues in the life sciences and health care, rather than a research discipline.
The Center is committed to enhancing the capacities of health professionals, scientists, and scholars to address bioethical issues together.
The craftwork of bioethics extends beyond research to real-time deliberations about emergent practical and policy questions.
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.
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:
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:
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.
This exploratory study will gather information about recruitment, appointment, and training of members for hospital ethics committees (HECs). Past studies have examined HECs, but have focused on the roles of the committees and the broad make-up of membership. Thus, our study will fill an important knowledge gap in trends of membership recruitment and appointment. We will collect survey results from chairs of HECs at hospitals across the country to better understand how ethics committees comprise their memberships.
The Hospital Ethics Committee and Center for Bioethics are conducting a study of ethics education in order to develop ways to improve medical ethics education at UNC. As a medical trainee at UNC, we value your perspective and hope you might complete our anonymous survey. The survey questions ask about your background and experiences with ethics education, your experiences with ethical issues in your clinical practice, and your familiarity with ethics services at the UNC Hospitals. It takes about 10 minutes to complete. You can access the survey via the 3rd and 4th year medical student listservs, the GME listservs for residents and fellows, or the GME Sharepoint site. «Or request a link from the study team here» There will be another brief survey near the end of this academic year. In other parts of the study, the research team will review the ethical issues that arise in our ongoing education series and in our consultation requests.
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:
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.
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