Appendix B
Biosketches

Lawrence O. Gostin, J.D., L.L.D. (hon.) (Chair), is the John Carrol Research Professor of Law, Georgetown University; Professor of Public Health at Johns Hopkins University; and Director of the Center for Law and the Public’s Health at Georgetown and Johns Hopkins. Previously, he served as Executive Director of the American Society of Law, Medicine & Ethics and as an Adjunct Professor at Harvard Law School and School of Public Health. He was also consulting legislative counsel to the U.S. Senate Labor and Human Resources Committee chaired by Senator Edward Kennedy.

Professor Gostin is on the editorial boards of several journals, and serves as law and ethics editor of the Journal of the American Medical Association. He has served on four Institute of Medicine (IOM) committees and is a member of the IOM Board on Health Promotion and Disease Prevention. Additionally, he has participated on the advisory committees of the World Health Organization, Centers for Disease Control and Prevention, National Institutes of Health, and UNAIDS. Professor Gostin was also a member of the President’s Task Force on National Health Care Reform. From 1974 to 1985, Professor Gostin was head of the National Council of Civil Liberties, legal director of the National Association of Mental Health, and a member of the faculty at Oxford University. He received the Rosemary Delbridge Memorial Award from the National Consumer Council (U.K.) for the person “who has most influenced Parliament and government to act for the welfare of society.” He also received the Key to Tohoko University for distinguished contributions to human rights in mental health after leading an International Commission of



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Implications of Genomics for Public Health: Workshop Summary Appendix B Biosketches Lawrence O. Gostin, J.D., L.L.D. (hon.) (Chair), is the John Carrol Research Professor of Law, Georgetown University; Professor of Public Health at Johns Hopkins University; and Director of the Center for Law and the Public’s Health at Georgetown and Johns Hopkins. Previously, he served as Executive Director of the American Society of Law, Medicine & Ethics and as an Adjunct Professor at Harvard Law School and School of Public Health. He was also consulting legislative counsel to the U.S. Senate Labor and Human Resources Committee chaired by Senator Edward Kennedy. Professor Gostin is on the editorial boards of several journals, and serves as law and ethics editor of the Journal of the American Medical Association. He has served on four Institute of Medicine (IOM) committees and is a member of the IOM Board on Health Promotion and Disease Prevention. Additionally, he has participated on the advisory committees of the World Health Organization, Centers for Disease Control and Prevention, National Institutes of Health, and UNAIDS. Professor Gostin was also a member of the President’s Task Force on National Health Care Reform. From 1974 to 1985, Professor Gostin was head of the National Council of Civil Liberties, legal director of the National Association of Mental Health, and a member of the faculty at Oxford University. He received the Rosemary Delbridge Memorial Award from the National Consumer Council (U.K.) for the person “who has most influenced Parliament and government to act for the welfare of society.” He also received the Key to Tohoko University for distinguished contributions to human rights in mental health after leading an International Commission of

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Implications of Genomics for Public Health: Workshop Summary Jurists delegation to Japan. He has successfully argued several cases before the European Court of Human Rights and has written the standard treatise on psychiatry and law in the United Kingdom. Professor Gostin’s latest books are Public Health Law: Power, Duty, Restraint (University of California Press, 2000); Public Health Law and Ethics: A Reader (University of California Press, 2002); The Human Rights of Persons with Intellectual Disabilities: Different but Equal (Oxford University Press, 2003); and The AIDS Pandemic: Complacency, Injustice, and Unfulfilled Expectations (University of North Carolina Press, 2004). Melissa Austin, M.S., Ph.D., is Professor of Epidemiology at the School of Public Health and Community Medicine, the Director of the Institute for Public Health Genetics at the University of Washington, and a Joint Member at the Fred Hutchinson Cancer Research Center. She currently serves on the Advisory Council for the National Heart, Lung, and Blood Institute and was an established Investigator of the American Heart Association from 1994 to 1999. Dr. Austin’s research program focuses on the genetic epidemiology of chronic diseases and risk factors, including cardiovascular disease, diabetes, and familial forms of cancer. Deborah Bowen, Ph.D., is an Associate Affiliate Professor of Psychology at the University of Washington, College of Arts and Sciences, and a Full Member in the Cancer Prevention Research Program of the Public Health Sciences Division at the Fred Hutchinson Cancer Research Center. The general focus of her research is on the implications of behavioral and social functioning at the level of the individual, small group, institution, or community for cancer prevention and control. More specifically, Dr. Bowen is interested in exploring the effects of community and of new technologies, including genetic testing and new communication technologies, on health outcomes and quality of life. She is active in the National Cancer Institute–funded Cancer Genetics Network. Ellen Wright Clayton, M.D., J.D., is the Rosalind E. Franklin Professor of Genetics and Health Policy; Director of Genetics and Health Policy Center; Senior Fellow, Institute for Public Policy Studies; Professor of Law; and Professor of Pediatrics at Vanderbilt University. Dr. Clayton has been studying and teaching the ethical, legal, and social implications of developments in genetics for more than a quarter-century and has published two books and more than 75 peer-reviewed articles and book chapters. She has been an active participant in policy debates advising the National Human Genome Research Institute as well as numerous other federal and international bodies on an array of topics, ranging from issues in

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Implications of Genomics for Public Health: Workshop Summary children’s health, including newborn screening, to the ethical conduct of research involving human subjects. In these roles, she has helped develop policy for numerous national and international organizations. She is a member of the Health Sciences Policy Board of the Institute of Medicine and recently served on the Committee on the Use of Third Party Toxicity Research with Human Research Participants of the Science, Technology, and Law Program. Irving Gottesman, Ph.D., is the Bernstein Professor in Adult Psychiatry and Senior Fellow in the Department of Psychology at the University of Minnesota (UMN). Prior to his appointment at UMN, he served on the faculties of Harvard University, University of North Carolina, Washington University School of Medicine (Professor of Psychiatric Genetics), and University of Virginia. Dr. Gottesman has written books on the genetic aspects of schizophrenia, which have been translated into Japanese and German. He was a Guggenheim Fellow at the University of Copenhagen and a MacArthur Foundation Fellow at the Center for Advanced Studies in the Behavioral Sciences (Stanford, California). He was elected Honorary Fellow of the Royal College of Psychiatrists in 1988 and received the 2001 Distinguished Scientific Contributions Award from the American Psychological Association. His interests include psychoses, personality disorders, genetic counseling for psychopathology, and assessment. He is Chair of the National Twin Register for the Institute of Medicine and also a member of the Board of the Medical Follow-up Agency. Karen Greendale, M.A., C.G.C., is a board-certified Genetic Counselor and previous President of the National Society of Genetic Counselors. She directs the Genetics Program for the Bureau of Chronic Disease Services, New York State (NYS) Department of Health. She also directs the NYS Ovarian Cancer Education and Awareness Initiative and is involved in several projects relating to cancer survivors and survivorship. Her responsibilities include increasing awareness of the role of genetics in adult-onset chronic diseases such as various cancers, diabetes, cardiovascular disease, Alzheimer’s disease, and the like. She has also been involved in numerous projects at the national level focused on integrating genomics into public health programs, including the Centers for Disease Prevention and Control’s Genomics Competencies for the Public Health Workforce effort and two retreats for Chronic Disease Directors. Sharon L. R. Kardia, Ph.D., is an Associate Professor of Epidemiology, Director of the Public Health Genetics Program, and Co-Director of the Michigan Center for Genomics and Public Health at the University of

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Implications of Genomics for Public Health: Workshop Summary Michigan, School of Public Health. Her main research interests are in the genetic epidemiology of cardiovascular disease and its risk factors. She is particularly interested in gene–environment and gene–gene interactions and in modeling complex relationships among genetic variation, environmental variation, and risk of common chronic diseases. She is also actively working on moving genetics into chronic disease programs in state departments of health. David Nerenz, Ph.D., is a Senior Staff Investigator in the Center for Health Services Research at Henry Ford Health System in Detroit. Most of his current work is focused on the issue of racial and ethnic disparities in quality of care and on the ways in which health care organizations can reduce or eliminate disparities. He is also Director of Outcomes Research for the Department of Neurosurgery and the Neuroscience Institute at Henry Ford and is the site Principal Investigator for a national study of patterns and outcomes of care for patients with lung or colorectal cancer. Dr. Nerenz received his Ph.D. in Social Psychology from the University of Wisconsin–Madison in 1979. He has served on previous Institute of Medicine committees related to the health of Gulf War Veterans and HIV care. Kenneth Offit, M.D., is the Chief of Clinical Genetics Service in the Department of Human Genetics at Memorial Sloan-Kettering Cancer Center. He is a medical oncologist with clinical and laboratory experience in cancer genetics. His research focuses on defining genetic factors that cause an increased susceptibility to cancer. Dr. Offit and colleagues identified the most common mutation associated with an increased risk of breast and ovarian cancer among individuals of Ashkenazi ancestry, and his ongoing research is aimed at defining new genetic risk factors and tailored interventions for families at hereditary risk for cancer. Dr. Offit served as a member of the National Cancer Insititute Cancer Genetics Working Group and is currently Chair of the Subcommittee on Cancer Genetics Education of the American Society of Clinical Oncology. David L. Rimoin, M.D., Ph.D., is Professor of Pediatrics, Medicine and Genetics at the David Geffen School of Medicine at UCLA and the Steven Spielberg Chair and Director of the Medical Genetics Institute at Cedars-Sinai Medical Center. He received his M.D. from McGill University and his Ph.D. in human genetics from Johns Hopkins University. He has published over 350 papers in peer-reviewed journals and edited 11 books, including Rimoin and Emery’s Principles and Practice of Medical Genetics. Dr. Rimoin has served as President of the American Society of Human Genetics and the American College of Medical Genetics Foundation, and was Founding President of the American College of Medical Genetics and

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Implications of Genomics for Public Health: Workshop Summary the American Board of Medical Genetics. Additionally, he served as Secretary/Treasurer of the American Federation for Clinical Research and President of the Western Society for Clinical Research and the Western Society of Pediatric Research. Dr. Rimoin is a member of the Institute of Medicine and served on the IOM Clinical Research Roundtable. David L. Veenstra, Pharm.D., Ph.D., is an Assistant Professor in the Department of Clinical Pharmacy at the University of California, San Francisco. His primary research interests are the clinical, economic, and policy implications of pharmacogenomic-based drug therapies. His projects include studying the association between drug metabolizing enzymes and adverse drug reactions, estimating the cost-effectiveness of pharmacogenomic interventions, and evaluating the impact of pharmacogenomics on the health care system and pharmaceutical industry. Dr. Veenstra also has significant experience in modeling chronic diseases such as diabetes, hyperlipidemia, hypertension, and hepatitis B and C. Recently, as part of an Academy of Managed Care Pharmacy (AMCP) educational program, Dr. Veenstra has been working with Pharmacy and Therapeutics committees to assist them in evaluating cost-effectiveness models submitted to health care plans by manufacturers. Deborah Klein Walker, Ed.D., is a Principal Associate at Abt Associates in the Health Services, Research and Evaluation practice area. Before joining Abt Associates in 2004, Dr. Walker was at the Massachusetts Department of Public Health for 15 years, where she most recently was the Associate Commissioner for Programs and Prevention responsible for programs in maternal and child health, health promotion, and disease prevention (including the tobacco control program); primary care and community health programs (including those for HIV/AIDS and substance abuse); minority health; data integration; and information systems. Prior to state service, Dr. Walker was an Associate Professor of Human Development in the Departments of Behavioral Sciences and Maternal and Child Health at the Harvard School of Public Health and a faculty member at the Harvard Graduate School of Education. Dr. Walker is Past President of the Association of Maternal and Child Health Programs and a former board member of the American Public Health Association. She is currently an Adjunct Professor at the Boston University School of Public Health and an Adjunct Lecturer at the Harvard School of Public Health. Dr. Walker’s research and policy interests include child and family policy, program implementation and evaluation, public health practice, disability policy, community health systems, health outcomes, and data systems.

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Implications of Genomics for Public Health: Workshop Summary Liaison to Board on Health Promotion and Disease Prevention George J. Isham, M.D., is Medical Director and Chief Health Officer for HealthPartners. He is responsible for Quality and Utilization Management, chairs the Benefits Committee, and leads Partners for Better Health, a program and strategy for improving member health. Before his current position, Dr. Isham was Medical Director of MedCenters Health Plan in Minneapolis. In the late 1980s, he was Executive Director of University Health Care, an organization affiliated with the University of Wisconsin–Madison. Dr. Isham received his Master of Science degree in Preventive Medicine/Administrative Medicine at the University of Wisconsin–Madison, and his Doctor of Medicine degree from the University of Illinois. He served his internship and residency in Internal Medicine at the University of Wisconsin Hospital and Clinics in Madison. His practice experience as a primary care physician included eight years at the Freeport Clinic in Freeport, Illinois, and three and half years as Clinical Assistant Professor in Medicine at the University of Wisconsin. HealthPartners is a consumer-governed Minnesota health plan formed through the 1992 affiliation of Group Health, Inc., and MedCenters Health Plan. It is a large managed health care organization representing nearly 800,000 members. Group Health, founded in 1957, is a network of staff medical and dental centers located throughout the Twin Cities. MedCenters, founded in 1972, is a network of contracted physicians serving members through affiliated medical and dental centers. Staff Lyla M. Hernandez, Study Director Makisha Wiley, Senior Program Assistant Rose Marie Martinez, Sc.D., Director, Board on Health Promotion and Disease Prevention