Dr. Sharp examined ethical dimensions of a major Federal research initiative in genetics. He described the research activities proposed and the current status of these new initiatives. Dr. Sharp considered ethical challenges related to data sharing, DNA biobanking, and reporting of research results to participants. Dr. Sharp also considered opportunities for situating bioethical analyses within the Precision Medicine Initiative.
Speaker: Richard R. Sharp, PhD, Professor, Biomedical Ethics and Medicine; Director, Biomedical Ethics Research Program, Mayo Clinic
In the Netherlands, end-of-life decisions are an important issue in societal debate. Euthanasia (the active ending of life by a physician on the patient’s explicit request) has become legalized as a consequence of this debate, but the debate continues. Is euthanasia allowed in dementia or in cases of elderly people for whom life has lost meaning? What is the relationship between euthanasia and palliative care? Sponsored by Department of Political Science and Center for Bioethics, University of Minnesota.
Speaker: Guy A.M. Widdershoven, Professor, Philosophy and Ethics of Medicine; Head of the Department of Medical Humanities, VU University Medical Center, Amsterdam
In this lectureship, Dr. Park provides a historical perspective on research and education in health informatics, explores factors affecting the development of health informatics, reviews global organizations related to health informatics and their activities and, shares her outlook on health informatics. Dr. Hyeoun-Ae Park has more than 30 years’ experience in biomedical research and health informatics. Her primary areas of research are use of health care vocabulary and terminology in electronic health records and clinical detailed models. Dr. Park has played a major role in establishing the Nursing Informatics (NI) program and linking the College of Nursing at SNU with the U of M's School of Nursing. She introduced the first statistical consulting lab and computer lab in a Korean nursing school. These innovations revolutionized nursing education and led to Dr. Park establishing the first nursing informatics major in graduate studies in Korea. Dr. Park has organized summer exchange programs with Minnesota and has made a particular effort to invite and welcome University of Minnesota alumni to international conferences. Her expertise in informatics and statistics has been a great benefit not only to the school but to the entire nursing community. The Center for Bioethics co-sponsored the Institute for Health Informatics 50th Anniversary lecture.
Co-sponsors: Center for Bioethics, International Medical Education and Research Program (IMER), and the Student Committee on Bioethics, University of Minnesota
Speaker: Professor Cong Yali, Professor of Medical Ethics at Peking University Health Sciences Center
When President Obama announced the new Precision Medicine Initiative in January, he recognized the enormous potential of genomic research and the growing role of genomics in clinical care. Both genomic research and genomic medicine are loaded with challenging ethical, legal, and social issues. In a series of NIH-funded grants beginning in 2005, Prof. Susan Wolf has been leading work on the question of how and when should genomic research results and incidental findings be offered to research participants, patients, and families. More recently, she has collaborated with other NIH-funded investigators in the Clinical Sequencing Exploratory Research (CSER) Consortium to develop a new model of the ethics of translational genomics. That model envisions a central role for return of results in propelling progress from research to clinical integration of genomic sequencing. Prof. Wolf will illuminate these cutting-edge issues, analyze ongoing debates, and address the future of genomics in medicine and public health. Co-sponsored with Law School, University of Minnesota.
Speaker: Susan M. Wolf, JD, Chair, Consortium on Law and Values in Health, Environment & the Life Sciences, McKnight Presidential Professor of Law, Medicine & Public Policy, Faegre Baker Daniels Professor of Law, Professor of Medicine
Health policy researchers often evaluate the social and economic consequences of chronic illness, but they rarely consider the implications of chronic illness on one important form of political participation: voting. If chronic illnesses—already unequally distributed in society—are associated with differential rates of voter turnout, then these inequalities in democratic representation could, in turn, produce further health inequity. In this talk, Gollust examined the associations between having diagnoses of five chronic conditions and turnout in the 2008 election. She discussed the implications of those findings within the context of health social movements, the role of health organizations in shaping political processes, and ethical questions about the boundaries of public health. Co-sponsored with Division of Health Policy & Management; and Political Science, University of Minnesota.
Speaker: Sarah Gollust, PhD Affiliate Faculty, Center for Bioethics; Assistant Professor, Division of Health Policy and Management, School of Public Health, University of Minnesota
Treatment decisions are not always guided by what is in the best interests of a pediatric patient is not in doubt: consider the very badly damaged baby whose parents painfully decide they must not consent to a costly course of treatments involving repeated hospitalizations that might prolong the infant’s life another year or two, because they live a half-day’s journey from the hospital and have three other young children at home. Such decisions have been defended by considering important interests of parents or siblings or sometimes grandparents that are taken to override the interests of the pediatric patient. Less ethical attention, however, has been paid to what is owed families—considered, not merely as the sum total of the individuals within them, but as morally valuable entities in themselves. Professor Lindemann found the exclusion of the family’s perspective from healthcare ethics peculiar, very widespread, and in need of remedy. In this talk she identified what is instrumentally and intrinsically valuable about a pediatric patient’s family, and argued that the family’s integrity, and therefore its goodness and soundness, can be put at risk when health care professionals make too many demands, or the wrong kind of demands, on it. Co-sponsored with University of Minnesota Department of Family Social Science and Medical School, Department of Pediatrics.
Speaker: Hilde Lindemann, PhD, Professor of Philosophy, Michigan State University