The highlight of the symposium will be a series of talks on topics with implications for translational and clinical research. The 2013 symposium speakers are:
Dr. Ellen Wright Clayton, JD, MD
Rosalind E. Franklin Professor of Genetics and Health Policy; Craig-Weaver Professor of Pediatrics; Professor of Law; Director, Center for Biomedical Ethics and Society, Vanderbilt University
Dr. Wright Clayton’s topic will be: How Should We Use Genomic Information for Primary Prevention?
This talk will consider the ethical issues related to the use of genome-based testing, particularly for primary prevention, and the ethical foundations that give rise to and shape the professional obligations of researchers and clinicians in this emerging area. Some of the dilemmas I will address include the following, with the goal of providing guidance for future action. When and under what circumstances is genomic information acquired? What is necessary to show that a particular result is pertinent for primary prevention on an individual and population bases? Can people be incentivized, positively and negatively, to act on this information? Do people have an opportunity to decide what tests are done and results disclosed? What about so-called incidental findings?
Ellen Wright Clayton is an internationally respected leader in the field of law and genetics who holds appointments in both the law and medical schools at Vanderbilt, where she also co-founded the Center for Biomedical Ethics and Society. She has published two books and more than 100 scholarly articles and chapters in medical journals, interdisciplinary journals and law journals on the intersection of law, medicine and public health. In addition, she has collaborated with faculty and students throughout Vanderbilt and in many institutions around the country and the world on interdisciplinary research projects, and helped to develop policy statements for numerous national and international organizations. An active participant in policy debates, she has advised the National Institutes of Health as well as other federal and international bodies on an array of topics ranging from children’s health to the ethical conduct of research involving human subjects. Professor Clayton has worked on a number of projects for the Institute of Medicine, of which she is a member of its National Advisory Council, and is currently vice-chair of a committee evaluating commercial sex exploitation in the United States. She also coordinated the Consent and Community Consultation working group of a five-institution consortium exploring the use of electronic medical records for genome-wide association studies. She is an elected Fellow of the American Academy for the Advancement of Science.
Prominent U-M faculty speakers:
Gilbert S. Omenn, MD, PhD
Director, Center for Computational Medicine and Bioinformatics
Professor of Molecular Medicine and Genetics
Professor of Human Genetics
Research Professor, Department of Computational Medicine and Bioinformatics
Professor of Public Health, School of Public Health
Dr. Omenn’s research focuses on cancer proteomics and informatics. He leads the Proteomics Alliance for Cancer Research, the HUPO Plasma Proteome Project, the Driving Biological Problems Core of the National Center for Integrative Biomedical Informatics, and the Center for Computational Medicine and Bioinformatics. There are datasets for application of analytical tools, and there are research teams eager to engage in collaborative studies in each of these initiatives. He has long-standing interests in mechanisms of genetic predispositions to risks from environmental and occupational exposures, pharmacogenetics and pharmacogenomics, and science-based risk analyses.
Edward B. Goldman, JD
Associate Professor, Department of Obstetrics and Gynecology
Adjunct Assistant Professor, Department of Health Management and Policy
Professor Goldman’s topic will be: Newborn Screening: Using residual dried blood spots for research: What happens when you take left over materials from a public health project for research?
Newborn screening is a public health initiative to locate and treat rare but serious diseases in newborns. Once screening is completed residual dried blood spots remain and can be used for research but there was never any consent for testing let alone research. So, how can privacy, consent and trust be appropriately managed? We will consider recent lawsuits in Texas and Minnesota along with the approach taken in Michigan.
Mr. Goldman enjoys a diverse career combining law, ethics, public policy, teaching, writing, and community service. Mr. Goldman has written on a number of topics in the health care field. His writing covers such important areas as refusing treatment, informed consent for breast cancer therapy, consenting to blood transfusion, Jehovah Witnesses, medico-legal issues in pulmonary medicine, the law of emergency care in neonatal emergencies, newborn screening and privacy issues. He has also published in the areas of genetics, wrongful birth, fetal versus maternal rights, medical education, and non-custodial parents’ rights in their children’s health care.