EGR Past events
Prof. Singh provides Ethical, Legal, Social Issues (ELSI) support to the Gates Foundation and its partners on gene drive research and its applications. In short, using a promising new technology called CRISPR/Cas9 to do targeted genome editing on mosquitos so that they produce male offspring (thus driving the species to extinction and, in the process, eliminating the spread of a disease), scientists will soon be field-testing these GM mosquitos in various settings. As you can imagine, this technology raises several ELSI issues
- Do we have the moral right to alter ecosystems?
- How do we deal with non-consensual communities or individuals in a field trial context, how do we engage with communities regarding this technology?
- How do deal with reparations if a field trial goes wrong, etc.
Speaker: Jerome Singh, BA, LLB, LLM, PhD, MHSc, Nelson R. Mandela School of Medicine, University of KwaZulu-Natal (UKZN); Joint Center for Bioethics, University of Toronto
Palliative care is an innovative and growing field focussing on life-threatening illness and on the relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. In this “holistic” approach palliative care differs from science based modern medicine and shows similarities to other “holistic” approaches to the patient as a subject as well as to pre-modern medicine. Professor Vollmann discusses from his ongoing research palliative care exceptionalism and a broader perspective on end of life care and modern medicine and its’ consequences for future health care.
Speaker: Jochen Vollmann, MD, PhD, Professor, Medical Ethics, Director, Institute for Medical Ethics and History of Medicine, and President, Center for Medical Ethics, Ruhr University Bochum, Germany
Waivers of informed consent for research participation are permitted under the Common Rule as well as the Exception from Informed Consent (EFIC) for emergency research rule. We examine waivers as embodiments of legal privilege, which permit actors to violate legal norms in furtherance of greater social goods. The emergency privilege, which allows a caregiver to provide emergency medical care to an incompetent victim of an accident, is the clearest example. But fundamental to the privilege to acting without consent is the presumption that reasonable persons in the patients' position would agree, if capable, and that no evidence exists that the particular patient would not agree. An assessment of what is known about participation and refusal rates in research show that the presumption with respect to standard care is not applicable to research. This suggests that, while researchers may assert the social utility of their studies are high enough to justify waivers,there is reason to suspect that many who would be enrolled under a waiver of consent would not want to be enrolled.Our analysis suggests that waivers should be rare, IRBs and researchers must explicitly address study acceptability, and it should be incumbent upon researchers to establish by clear, sound evidence that proposed studies would be acceptable in the community at large and the target population.
Speaker: Jon Merz, MBA, JD, PhD, Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania
As our day-to-day lives are increasingly reliant upon (and enmeshed with) digital platforms, it is not surprising that the ways we address and manage our health generally, and mental health in particular, are increasingly digitized as well. Our culture’s generally favorable attitude toward digital solutions for everyday problems has led to the emergence of a digital mental health industry, which includes smartphone applications (“apps”) and telemental health services.
New and largely unregulated, the digital mental health industry presents its toolsets as affordable and a cost and time-effective alternative to many of the problems and barriers associated with the treatment of mental illness: clinician and specialist scarcity, treatment unaffordability, and the geographic remoteness of rural patients. Through a combination of fieldwork and interview analysis, this research addresses these claims and the future of the industry, with findings that are relevant to medical practitioners, technologists, researchers, mental health advocates and activists, and others whose work explores the connections between technology and medicine.
Speaker: Emma Bedor Hiland, PhD Candidate, Department of Communication Studies, University of Minnesota
How does a non-medically trained individual respond when life support no longer supports life? Using her own real life example, Deborah brings the audience on her journey as she learned to navigate the complexities of the medical world in order to honor her husband’s choices regarding medical care at end-of-life.
Speaker: Deborah Day Laxson, Founder of the Health Care Agent Literacy Project and author of the award winning book The Gray Zone: When Life Support No Longer Supports Life."
A disappearing arctic ice cap. Rising oceans. Once in a century floods are occurring annually, even as deserts expand. Plastic and chemicals cover the seas and lands. Pollinating bees are disappearing as agriculture defends the chemicals that kill them. Tropical diseases are migrating north into temperate zones that are warming to greet new species of mosquitos. Some say we are living in an “Anthropocene Epoch” where humans rather than natural forces are transforming the planet. Does bioethics have anything useful to say? Dr. Miles explored the history and future directions for bioethics. This talk was based on a collaboration with Susan Craddock, PhD.
Speaker: Steven Miles, MD, Professor and Maas Family Endowed Chair in Bioethics, Center for Bioethics; and Department of Medicine, University of Minnesota Medical School
“Moral hazard” is a term familiar in economics and business ethics that illuminates why rational parties sometimes choose decisions with bad moral outcomes without necessarily intending to behave selfishly or immorally. The term is not generally used in medical ethics. Decision makers such as parents and physicians generally do not use the concept or the word in evaluating ethical dilemmas. They may not even be aware of the precise nature of the moral hazard problem they are experiencing, beyond a general concern for the patient’s seemingly excessive burden. Our seminar will bring the language and logic of moral hazard to pediatrics. The concept reminds us that decision makers in this context are often not the primary party affected by their decisions. It appraises the full scope of risk at issue when decision makers decide on behalf of others and leads us to separate, respect, and prioritize the interests of affected parties.
Speakers: Don Brunquell, PhD, LP, Affiliate Faculty, Center for Bioethics; Christopher Michaelson, PhD, David A. and Barbara Koch Distinguished Professor of Business Ethics and Social Responsibility, Associate Professor, Ethics & Business Law, University of St. Thomas, Opus College of Business
Healthcare professionals, hospital administrators, and clinical ethics consultants are increasingly aware of the existence of moral distress in the workplace and the potentially damaging long-term effects of burnout, moral distancing, and intent to leave a position or profession. Studies indicate that 15-20% of physicians and nurses are considering leaving their positions due to moral distress. Strategies to address moral distress are needed but few have been proposed. Such strategies are necessarily different from those used in clinical ethics consultation where the objective is to resolve a patient-focused problem. In morally distressing situations, the problems are often at the unit, team, and/or organizational level; solutions require interprofessional collaborative effort and buy-in at different levels of the organization.
Speakers: Mary Faith Marshall, PhD, FCCM, Emily Davie and Joseph S. Kornfeld Professor of Biomedical Ethics, University of Virginia; Beth Epstein, PhD, RN, HEC-C, FAAN, Associate Professor, Chair, Department of Acute and Specialty Care, University of Virginia School of Nursing
Biobanking is becoming an increasingly important component of genomic and medical research. President Obama’s Precision Medicine Initiative ― which proposes the collection of genetic and clinical data for upwards of 1 million Americans ― is just one example of this trend in medical science. Because biobanks depend upon donations from a willing public, it is important that potential donors trust that their donations are being used to promote goals they endorse. Earlier research has shown that some Americans have significant moral concerns about the kinds of research that might be done with their donations, hence the current default model of “blanket” or “broad” consent used by biobanks ― which ignores these concerns ― may diminish willingness to donate. In an effort to better understand the extent and implications of these moral concerns, we fielded a survey examining associations between moral concerns and willingness to donate to a biobank. We found that most people do have moral concerns that significantly affect their willingness to donate to a biobank using blanket consent and that these moral concerns vary across subgroups of the population. But should we care? After all, donors to biobanks rarely learn how their donations are used and “what you do not know cannot harm you.”
Speaker: Raymond De Vries, PhD, Professor and Co-Director, Center for Bioethics and Social Sciences in Medicine, University of Michigan Medical School
In today’s aging society, the line between life-giving therapies and too much treatment is hard to see — it is obscured by a perfect storm created by private industry, insurance reimbursement and the promises of evidence and new technologies. The lecture reveals what drives the storm’s “more is better” approach to medicine: a nearly invisible chain of social, economic and bureaucratic forces that has made once-extraordinary treatments seem ordinary and necessary. The lecture provides a map to the socio-cultural sources of our health care dilemmas.
Speaker: Sharon Kaufman, PhD, Chair, Department of Anthropology, History and Social Medicine; Professor Emerita, Medical Anthropology, University of California San Francisco