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CEDG and HEC Welcome Konan Beke and Celia Mizelle

September 29, 2020

Konan Beke and Celia Mizelle have been selected as the new student leaders for the School of Medicine’s  Clinical Ethics Discussion Group This position also entails appointment to the UNC Hospital Ethics Committee. Outgoing leaders are Tyler Clay and Mark Baumgarten. Center for Bioethics faculty members Arlene Davis, Jean Cadigan, and Eric Juengst are advisors to the student group. Professors Davis and Cadigan are also HEC members.

 

Konan Beke spent most of his childhood in Asheville, NC. In 2019, he graduated from Wake Forest University with a B.S. in Biology and a double minor in Chemistry and Philosophy. Konan also co-founded the first Undergraduate Philosophy Conference at Wake Forest; he hopes to integrate his interest in philosophy with his medical education through the study of bioethics and social medicine. After graduating, Konan worked as a medical scribe at a hematology/oncology practice which has inspired him to pursue Medical Oncology. Additionally, his interests include hiking, basketball, and podcasts.

Celia grew up in a multigenerational household in Chapel Hill. After graduating from Duke in 2019, she worked for a modern dance company and enjoyed living in Colorado. For the past 3 years, she has volunteered as a birth doula, which solidified her desire to provide patient-centered primary care as a physician. As a doula, she saw that the principles of clinical ethics have salient applications within the field of OB/GYN, and she is eager to learn more through her involvement with the HEC.

PHASES Guidance

July 13, 2020

Health, Bioethics Experts and Advocates Release a Call to Action to the

HIV/Co-infections Research Community:

“We must work together to give pregnant women the evidence base they deserve.”

New Report Lays out Recommendations for Including Pregnant Women in Research
on HIV and Co-infections Prevention and Treatment

CHAPEL HILL, NC – July 10, 2020 – Pregnant women are among those most in need of safe and effective preventives and treatments for HIV and co-infections. Yet because they are commonly excluded from research, they are among the least likely to have robust, timely evidence to inform decisions around the use of medications.

“The resulting evidence gaps and delays are significant,” said senior author and PHASES Principal Investigator Anne Drapkin Lyerly, MD, professor of social medicine at the UNC School of Medicine and associate director of the UNC Center for Bioethics, “and they put pregnant women and their children in harm’s way.  Ethically, we must work together to give pregnant women the evidence base they deserve.”

Changing practices in the HIV/co-infections research community so that women, providers, and policy makers can make evidence-informed decisions around the use of medications during pregnancy is the goal of the new report, Ending the Evidence Gap for Pregnant Women around HIV and Co-infections: A Call to Action, issued today by the Pregnancy and HIV/AIDS: Seeking Equitable Study (PHASES) Working Group – an international and interdisciplinary team of 26 experts in bioethics, public health, law, obstetrics and maternal-fetal medicine, pediatrics, HIV research, infectious disease, and pharmacology, as well as community advocates for women living with HIV.  Led by faculty at the University of North Carolina School of Medicine, Georgetown University, and Johns Hopkins University, the PHASES Project -with funding from the U.S. National Institutes of Health- conducted extensive research with affected women and engagement with the HIV research community to inform the report. The guidance, presented this week at the AIDS 2020: Virtual conference, has been endorsed by the International Community of Women Living with HIV Global and East Africa.

“The HIV research and advocacy communities have increasingly recognized the importance of protecting pregnant women through responsible research.  But there are still a lot of misconceptions and other barriers to doing this work – our guidance aims to clear an ethical pathway forward for research to improve the health and safety of women and the children they bear,” said Lyerly.

The guidance puts forth 12 concrete, actionable recommendations, which include:

  • Formalize a global network for advocacy and resources.  The global HIV/co-infections research and advocacy communities, supported by funders, should formalize a network to develop and share a portfolio of resources to empower the HIV research community to advance needed research with pregnant women.
  • Design for inclusion. Researchers designing trials addressing HIV/co-infections should integrate pregnant women wherever possible and optimize opportunities to gather pregnancy-specific data.
  • Ensure equitable research on pregnant women’s own health. Agenda setters in HIV/co-infections research should commit to promoting the study of pregnant women’s own health needs as a key pillar of effort and funding. Research into fetal safety outcomes should be matched by relevant maternal outcomes assessments.
  • Enhance post-approval safety evaluations.  The HIV/co-infections research community should commit to a more robust and regularized structure of postapproval safety evaluations to ensure both adequate pharmacovigilance and pregnant women’s timely access to important drugs.
  • Contextualize risk findings. Those conducting HIV/co-infections research with pregnant women should anticipate possible adverse events and proactively develop communication strategies for adequately contextualizing them against baseline rates of such events. Communication of overall findings should contextualize potential risks of an intervention against its potential benefits and the risk-benefit profiles of alternatives.

The full report and recommendations are available at hiv.pregnancythics.org. Anne Drapkin Lyerly can be reached at alyerly@email.unc.edu

Along with Lyerly, the co-leaders of the PHASES project and Working Group guidance are Kristen Sullivan, PhD, at the UNC School of Medicine, Maggie Little, PhD, from Georgetown, and Ruth Faden, PhD, MPH, from Johns Hopkins.

This work was supported by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health under award number R01AI108368 [PI Lyerly]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Incidental Enhancements: A Neglected Governance Challenge for Human Genome Editing Research

June 25, 2020

The increasing pace and international diffusion of developments in human genome editing research have prompted ongoing efforts to develop responsible governance for such research. One point of broad agreement across these efforts is that human genome editing research should prioritize medical applications over attempts to enhance human traits because of the moral concerns the latter would raise. What qualifies as human enhancement and how to address issues that may arise in this arena remain uncertain. Moreover, several influential reports expand their interpretation of medical applications beyond disease treatment to endorse disease prevention as a goal for genome editing research. Basic human genome research and animal studies aspiring to this goal are already underway. But preventing disease through human genome editing would incidentally facilitate human enhancement applications in a variety of ways. If these translational research efforts are penalized by policy concerns about those applications, then their preventive health benefits could be lost. Conversely, society could be caught off guard by the emergence of genome editing applications that evoke the very moral concerns that the policy line against enhancement is meant to forestall. To responsibly anticipate these challenges, science policymakers will need to know more about the salience of enhancement concerns in the context of preventive genome editing (PGE) research and how best to develop research governance to address them.

This project addresses these needs through the following research questions:

  1. How do the goals, incentives, and values driving cases of preclinical PGE research affect the ways that its incidental enhancement implications are interpreted and addressed for governance purposes?
  2. How well might different forms of research governance be expected to anticipate and address these different concerns?
  3. Given the potential human health benefits of preventive genome editing research, what ethical weight should science policy give to the various enhancement concerns? Answering these questions requires both empirical research and ethical analysis.

Specific Aims

  • Enlists scientists to examine the professional and social factors that shape the trajectory of basic research relevant to preventive genome editing. Their perspectives will inform a taxonomy of different ways of interpreting incidental enhancements for policy purposes, and a preview of the governance challenges they will raise.
  • Follow national and global genome editing policy groups to capture the lessons of their experiences, in order to assess the relative merits of different approaches to governance in dealing with incidental enhancement concerns.
  • To inform an empirically grounded ethical analysis of the policy choices facing those engaged in genome editing research governance in different cases. The product of this project will be a set of case studies designed to help science policy makers, the research community, and the public anticipates the incidental enhancement concerns that preventive genome editing research will pose.

Principal Investigators

Co-Investigators

  • Jean Cadigan, Ph.D., Associate Professor, Department of Social Medicine, University of North Carolina at Chapel Hill
  • Gail E. Henderson, Ph.D., Director, UNC Center for Genomics and Society, University of North Carolina at Chapel Hill
  • Douglas P. MacKay, Ph.D., Assistant Professor, Department of Public Policy, University of North Carolina at Chapel Hill
  • Rebecca L. Walker, Ph.D., Professor, Department of Social Medicine, University of North Carolina at Chapel Hill
  • Arlene M. Davis, J.D., Associate Professor, Department of Social Medicine, University of North Carolina at Chapel Hill
  • John M. Conley, Ph.D., Professor, School of Law, University of North Carolina at Chapel Hill

Funder

NIH – National Human Genome Research (1R01HG010661-01A1, 4/1/2020 – 3/31/2024)

CENNC 2019 Conference

October 7, 2019

Ethical Issues in Caring for the Underserved: The Vulnerable, Marginalized, and Forgotten

September 20, 2019

co-sponsored by the Center for Bioethics, ECU Brody School of Medicince, CENN, Eastern AHEC and UNC Eshelman School of Pharmacy

CEDG and HEC Welcome Sara Meyers and Lisa Michelson

October 3, 2019

Sara Meyers and Lisa Michelson have been selected as the new student leaders for the School of Medicine’s  Clinical Ethics Discussion Group This position also entails appointment to the UNC Hospital Ethics Committee. Outgoing leaders are Tyler Clay and Mark Baumgarten. Center for Bioethics faculty members Arlene Davis, Jean Cadigan, and Eric Juengst are advisors to the student group. Professors Davis and Cadigan are also HEC members.

Sara Meyers spent her childhood in Chapel Hill and in Idaho. She graduated from Yale University with a B.S. in Biology and as a Global Health Scholar in May 2018. Sara completed a bioethics and law course during her time in college and is looking forward to continuing to learn and advance in this subject by her committee membership. Before entering medical school, she worked in an administrative position in an OBGYN clinic in South Carolina where her fiancé is stationed for the Air Force. Sara has a special place in her heart for women and children, and is interested in pursuing OBGYN or Pediatrics. She loves reading, running, spending time in the outdoors, and hearing the stories of others.

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Lisa Michelson was raised in New Bern. In 2014, she graduated from Wake Forest University with a Bachelor of Arts in Religious Studies. With multiple intersecting interests in Biology, Medicine and Religion, she went on to complete her Masters in Bioethics and Medical Humanities at the University of Louisville in 2017. Then, in 2019, she completed her Master of Physiology at North Carolina State University. Over the past four years, Lisa has been an HEC guest at the University of Louisville and at UNC. She looks forward to learning more about how standing HEC members utilize ethics to resolve moral problems in medicine. Lisa previously worked at a junior golf association and tries to play golf whenever she can. Additionally, Lisa’s interests include cooking, as well as spending time with family and friends.

Social Medicine faculty featured in Oxford Handbook of Public Health Ethics

September 12, 2019

Congratulations to Center for Bioethics’s Jean Cadigan, Elana Jaffe, Eric Juengst, Anne Lyerly and Social Medicine’s Gail Henderson, Karen Meagher, and Tonia Poteat.

The Oxford Handbook of Public Health Ethics is a prestigious international reference collection that publishes reviews of ethical issues in public health solicited from leading scholars around the world. The recently published volume features work by five faculty and two mentees from the UNC Department of Social Medicine.

Read more here.

Clinical Ethics Discussion Group Spring 2019 Event

April 6, 2019

On April 2nd student groups from CEDG and Cardiology had a discussion about how the historical development of the artificial heart and other means of mechanical circulatory support (MCS) inform contemporary practice and of the ethical issues that follow from such technologic advancement. The Center thanks its CEDG leadership, Tyler Clay and Mark Baumgarten, for their excellent CEDG leadership this year.

Helen Cooney, Former Heart Mate (Artificial Heart) Team Member shared about her work with patients and teams around the first artificial heart.  Liz Sonntag, MD, MICU Fellow, and HEC Member, discussed the ethical issues that arise in today’s use of MCS  based in part on her work editing an upcoming edition of AMA Journal of Ethics devoted to that topic.

 

Beyond Our Beginnings: 50 Years of Bioethics

February 12, 2019

Beyond Our Beginnings:  50 Years of Bioethics“.

We are hosting it at the Mews location at the  Graylyn International Conference Center

In recognition of the Hastings Center’s 50th anniversary, this conference surveys the past, present, and future of bioethics scholarship, practice, and policy. The program addresses a broad range of issues and topics, including medical and research ethics, health disparities and health equity, health law, policy, and financing, and the history and philosophy of bioethics. It features internationally renowned senior scholars in bioethics from the Southeast and Midatlantic regions whose work has shaped the field. They will reflect on where we have been and where we should be going.

Registration is free but required. Space is limited. Register here: https://wfu.cvent.com/d/6gq5md/

For the complete Conference program, see: http://bioethics.wfu.edu/conference-area/

 

Panel Session 3 – Research Ethics
Panelists:
Eric T. Juengst, PhD (UNC School of Medicine)
Nancy M. P. King, JD (Wake Forest School of Medicine)
Christine Grady, MSN, PhD (NIH Clinical Center)
Moderator: Ana Iltis, PhD (Wake Forest University)

Panel Session 4 – Disparities & Health Equity
Panelists:
Paul Lombardo, JD, PhD (Georgia State University School of Law)
Margaret Humphreys, MD, PhD (Duke University)
Patricia King, JD (Georgetown University School of Law)
Moderator: Rebecca Walker, PhD (University of North Carolina School of Medicine)