Events

Panel Summary

Jessica Berg, JD, MPH
Dean and Tom J.E. and Bette Lou Walker Professor of Law
Case Western Reserve University School of Law

The technology revolution has had an enormous effect on all aspects of the practice of medicine, from record-keeping to scheduling to billing to treatments to research. But although there have been efforts to create online decision-aids to facilitate informed consent, little thought has been given to the role of social media in surrogate decision making.

Eric T. Juengst, PhD
Professor in the Department of Social Medicine and the Department of Genetics
Director, UNC Center for Bioethics
University of North Carolina, Chapel Hill

One popular ethical boundary for human gene editing research is the line between developing new treatments for disease and developing ways to enhance human traits for social purposes.  But what about interventions intended to strengthen human capacities to resist disease, in the name of prevention?   

Alicia Eli Yamin, JD, MPH
Adjunct Lecturer on Global Health and Population, Harvard TH Chan School of Public Health
Faculty, Dept. of Global Health and Social Medicine at Harvard Medical School

Professor Yamin will articulate a vision of what applying a human rights framework to health can mean, and why it matters at this particular point in history in particular. In doing so, she will analyze shortcoming in the ways that human rights frameworks and human rights-based approaches are sometimes conceptualized and applied and why this should concern us. She will also provide examples from her own experience of how different aspects of human rights-based approaches to health have been promoted in concrete contexts by different actors, what it has meant in real people’s lives — and what can we learn from these experiences.

Dr. Adebamowo will discuss his NHGRI/NIH funded study of Comprehension of Heritability in Genomics Studies among the Yoruba in Nigeria, methodologies for implementing similar studies in other communities, online repository of indigenous words and recommendations for future studies.

Diane E. Meier, MD, FACP, FAAHPM
Director, Center to Advance Palliative Care
Co-director, Patty and Jay Baker National Palliative Care Center
Professor, Department of Geriatrics and Palliative Medicine
Catherine Gaisman Professor of Medical Ethics, Icahn School of Medicine of Mount Sinai

The essential principles of medical ethics are respect for the personhood or autonomy of our patients and the twin obligations to do no harm and to serve the good of the patient (nonmalificenceand beneficence). The typically narrow focus on disease treatment that characterizes care of the seriously ill in the U.S. often fails to honor these principles. Palliative care is organized around understanding the patient as a person, helping the patient to articulate what is most important to them in the context of the realities of the illness, and then developing and implementing a care plan that meets those goals.

Sharrona Pearl, Ph.D.
Associate Professor of Medical Ethics
Drexel University

Both like and not like cosmetic surgery and whole organ transplants, facial allografts have proven difficult to categorize. This talk will show how bioethicists, surgeons, and journalists have conceptualized face transplants as neither and both, and the resulting stakes for each. Paying particular attention to the media coverage of Isabelle Dinoire’s partial facial allograft in 2005, Pearl will discuss the implications of the cosmetic frame and the whole organ frame for the bioethical debates around FAT.