Post-Traumatic Stress Disorder (PTSD) is a source of clinical and theoretical concern in military personnel, victims of child abuse, rape, and disasters as well as in certain aspects of health professionals’ training and practice. The Center began work on some of the ethics issues in research and clinical treatment for PTSD and was led to a wider set of related issues touching on research aimed at identifying biomarkers of resilience that can be useful in screening, early detection, diagnosis, and treatment of various mood and stress disorders, as well as the potential for pharmacological interventions to blunt the impact of traumatic memories. Publications flowing from the project included Barry R. Schaller’s book, Veterans on Trial, and Erik Parens’s “The Ethics of Memory Blunting and the Narcissism of Small Differences,” Neuroethics (15 May 2010). The PTSD project was supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation.
Anyone who has surgery, a biopsy, or even blood drawn probably doesn’t think much about what happens to their tissue or blood after it has been removed. Some of these samples are discarded, but many are stored in freezers and used later for various kinds of medical research. Sometimes we give consent for our tissue to be used in research, but other times it is stored without our knowledge or consent. The recently revealed story of Henrietta Lacks provides an excellent case in point.
What sorts of ethical questions are raised when leftover tissue samples are used in medical research? This project sought to examine some of these questions and offer suggestions regarding how hospitals and researchers should use leftover tissue samples to conduct important medical research. Questions include: when (if ever) does research on leftover tissue samples present so little risk to donors that consent becomes unnecessary? How explicit and specific should hospitals and researchers be in informing patients that their tissue may be stored and used for research? Some tissue samples have been stored for decades, and the donor is either unknown or has died—can these samples be used without consent? How can researchers anticipate risks not only to individuals, but also to families and even ethnic groups? What are the ethical implications when scientists or corporations profit from the use of such tissue?
Our group included trained scientists, administrators of IRB programs, philosophers, theologians, political scientists and editors. The group’s efforts partly underwrite current efforts at the Yale-New Haven Hospital to establish methods of informing hospital patients of the ways in which their tissue may be used to advance medical science. This project was supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation.
In response to a rapidly-changing market for food, PepsiCo recently made extensive changes to its research programs in an effort to expand its portfolio of healthy products, and to make its staple snack products healthier and safer to use. This push into nutritional science involved increased use of human subjects in research. PepsiCo called on the Yale Interdisciplinary Center for Bioethics for help in developing ethical guidelines for human-subjects nutritional research. The new guidelines are designed 1) to ensure compliance with existing federal and international standards; 2) when necessary, to adapt those standards, which were mostly developed with drug-research in mind, to nutritional research; 3) to offer additional voluntary protections to human subjects participating in nutrition research; and 4) to raise industry standards with regard to the conduct, registration and publication of research. The Center drafted the guidelines, and then subjected them to peer review by a small group of academic and governmental experts in human subjects research. PepsiCo printed and adopted the Center’s recommended guidance in 2010.
The Interdisciplinary Research Consortium on Stress, Self-Control and Addiction (IRC) is a research consortium of over 50 scientists from three universities: the University of California at Irvine, Florida State University, and Yale. At Yale, the consortium’s activities are based at the Yale Stress Center. These researchers are collaborating to gain a greater understanding of stress and self-control mechanisms in addiction, in order to develop new prevention and treatment strategies to enhance self-control, and to decrease addictive behaviors. Its ultimate goals include the identification of biological markers for individuals at risk for developing addictive behavior, and the development of psychosocial or pharmacological interventions to prevent that behavior. Robert Levine and Julius Landwirth were awarded a grant of $10,290 by the IRC to conduct a study of the ethical, legal and social implications of the IRC’s research on adolescent subjects.
This ongoing project was funded by $25,000 in incremental gifts from the John Haas Foundation. The purpose is to convene representatives from diverse disciplines, including anthropology, history, social psychology and neuroscience in order to elaborate understanding of the underlying psychosocial dynamics that differentiates heroic rescuers during periods of mass killings or genocides and the possible implications for genocide prevention strategies. The project is being carried out in collaboration with Ben Kiernan of the Yale Genocide Studies Program and researchers from the fields of psychiatry and psychology such as Bruce Wexler and John Dovidio. Two well-attended conferences were held in May 2008 and May 2009 that have produced over 15 writings that hopefully will be organized into an edited publication. The work also led to an invitation (unfunded) to present at the annual meeting of the International Society for Political Psychology in July, 2009.
This collection of essays is about the awesome and painful decisions that often must be made when a life is nearing its end. The participants in these decisions include medical caregivers, family, and, when possible, patients themselves. Everyone wonders whether further aggressive medical treatment is advisable; they think it may be futile or even harmful. Should the emphasis in care switch to providing comfort for the remainder of life, rather than continuing a struggle that cannot be won? That such a switch should be made has been conceded by almost everyone who has written about end of life care in the past forty years. Understandably, however, it is one thing to make this argument in a classroom or journal and another thing to act on it. In these essays we hope to describe the textures of seemingly pointless treatment in various care settings and to identify a set of relevant and often controverted variables.
Click Here to download a PDF of these essays. Be sure to check out the ‘Bookmarks’ tab on the PDF for quick and easy navigation of the document.
In 2005, the Rights of Children study group produced a report in conjunction with Casey Family Services, a nonprofit child welfare agency, called “Improving the Well-Being of Our Children: Closing the Gap between Research and Policy.”
As a product of the Bioethics & Public Policy Seminar Series, two related volumes were published. Co-editors Arthur Galston and Emily Shurr produced the first in 2001, New Dimensions in Bioethics: Science, Ethics, and the Formulation of Public Policy. In 2005, Galston paired with Christiana Peppard to edit the second, Expanding Horizons in Bioethics.
Fifteen papers based on presentations at the symposia on “Ethical Aspects of Avian Influenza Pandemic Preparedness” (described in the Partnerships section) were gathered into a special double edition of the Yale Journal of Biology and Medicine (Volume 78, Numbers 5 and 6). The edition was edited by Jonathan Moser, then Program Coordinator of the Bioethics Center.
In summer 2009, the Yale Journal of Health Policy, Law, and Ethics produced a special supplemental symposium issue on the ethics and regulation of human embryonic stem cell research. The issue was largely the product of the Bioethics Center. Featuring articles drawn from a broader set of papers originally delivered at a Bioethics Center-sponsored conference, the issue was guest-edited by Bioethics Center affiliates Susan Owen (who helped organize the original conference) and Brian Sorrels (who selected the articles for publication in the journal), and had its production costs subsidized by the Bioethics Center. The issue featured articles by Robert Burt (Yale Law), Daniel Callahan (The Hastings Center), James Fossett (SUNY, Albany), Robert Levine (Yale Med and Bioethics), Gene Outka (Yale Divinity), Jane Maienschein (Arizona State) and Rajesh Rao (Harvard Med), with an introduction by Stephen Latham.
In 2002, a sub-grant from the Center’s grant from the Patrick and Catherine Weldon Donaghue Medical Research Foundation was awarded to Julie R. Rosenbaum, Elizabeth H. Bradley, Eric S. Holmboe, Harlan Krumholz, and Michael Farrell. The following is a brief description of their work.
Medical educators have increased their emphasis on teaching medical ethics and professionalism. Despite curricular improvements, little is known about residents’ experiences that may affect the development of ethical norms and behaviors. The purpose of this study is to describe situations medical residents report as being problematic, how they cope with them and the emotional and behavioral impact of these experiences. Using qualitative methods, randomly-selected residents participated in open-ended, in-depth interviews over a six-month period. Residents commonly experienced conflicts with peers, faculty, and patients that were reported to cause substantial distress. Residents coped by depending on each other or their families, or they made mental compensations. They noted a lack of support from their programs. However, the residents reported generally positive alterations in behavior resulting from the experiences. The relationship between the events and the behavioral changes, whether the positive alterations described by the residents or unreported, perhaps more negative changes, is crucial for understanding the moral and professional development of physicians.
On June 15, 2009, the Bioethics Center convened a working group designed to discuss and address the potential conflicts of conscience that arise for health care practitioners in end-of-life situations. Included were perspectives from physicians, nurses, bioethicists, and lawyers. We wanted to begin to define the nature and scope of moral distress in the health care professions and its relation, or lack thereof, to conscientious objection.
The term “moral distress” originated in the nursing literature as a label for situations in which nurses feel compelled, for various reasons, to perform acts that are morally questionable in their eyes. It has become clear that all health care professionals may encounter all types of situations of moral distress throughout their professional careers. Discussions concerned such issues as health care staff collaboration, professional duty and personal virtue, paternalism and autonomy, and institutional infrastructure and necessity. Balancing institutional barriers or duties with individual moral responsibility within intense situations requires serious reflective deliberation. Ranging from clinical case studies and examples to theological and ethical reflections, this group has begun to clarify a working concept and its scope.
As the meeting concluded, the participants’ enthusiasm was evident and the topic’s urgency was clear. The group hopes to further their work in this area and is determining next steps for research projects and/or publications.
Project Director: David Smith, Director, Yale’s Interdisciplinary Center for Bioethics
Nancy Berlinger, Deputy Director, Research Scholar, The Hastings Center
Audrey Chapman, Professor and Joseph M. Healey, Jr. Memorial Chair, Medical Humanities and Ethics, Department of Community Medicine and Health Care, University of Connecticut Health Center
Constance Donovan, Associate Clinical Professor, Yale School of Nursing; fmr. Cancer Clinical Nurse Specialist, Yale New Haven Hospital
Tom Duffy, Professor of Internal Medicine; Director, Center for Humanities and Medicine, Yale School of Medicine
Ann Hamric, Associate Professor of Nursing, Faculty Affiliate, Center for Biomedical Ethics and Humanities, University of Virginia
Alison Jost, Research Assistant, Yale Interdisciplinary Center for Bioethics
Melissa Kurtz, Joint Degree Candidate, Yale School of Nursing and Divinity School
Craig Luekens, Research Assistant, Yale Interdisciplinary Center for Bioethics and Nursing School
Mark Mercurio, Associate Professor of Pediatrics, Yale School of Medicine; Director, Yale Pediatric Ethics Program; Chair, Yale New Haven Children’s Hospital Ethics Committee
Jason Smith, Assistant Professor, Department of Community Medicine and Health Care, Division of Medical Humanities, Health Law and Ethics, University of Connecticut Health Center
Martin Smith, Director of Clinical Ethics, Cleveland Clinic Main Campus
Aileen Walsh, Senior Lecturer, Anglia Ruskin University