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Assessing Genetic Risks: Implications for Health and Social Policy APPENDIX B Committee Biographies LORI B. ANDREWS is a Visiting Professor of Law at Chicago-Kent College of Law, on leave from her position as Research Fellow at the American Bar Foundation. For the past six years, she has also been a Senior Scholar at the Center for Clinical Medical Ethics at the University of Chicago. She has been a member of advisory panels to the World Health Organization, the Centers for Disease Control and Prevention, the U.S. Department of Health and Human Services, and the Office of Technology Assessment of the U.S. Congress, and she has taught health law courses at the University of Houston Law Center, the University of Chicago School of Law, and the Graduate School of Business at the University of Chicago. Ms. Andrews is the author of Medical Genetics: A Legal Frontier (1987). She has also written three other books and more than fifty scholarly articles, monographs, and book chapters on subjects including medical genetics, informed consent, and alternative modes of reproduction. She received her B.A. summa cum laude from Yale College and her J.D. from Yale Law School. BARBARA BOWLES BIESECKER is Genetic Counselor and Section Head in the Medical Genetics Branch of the National Center for Human Genome Research at the National Institutes of Health, Bethesda, Maryland. She obtained her M.S. degree from the University of Michigan in 1981 and has held six genetic counseling positions at several universities in the midwest. She has been President of the National Society of Genetic Counselors and Associate Director of the Genetic Counseling Graduate Program at the University of Michigan. Her areas of interest include research in genetic counseling, the psychological ramifications of genetic disorders, and the implications of gene testing.
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Assessing Genetic Risks: Implications for Health and Social Policy JAMES F. CHILDRESS is the Edwin B. Kyle Professor of Religious Studies and professor of medical education at the University of Virginia, where he is also chairman of the Department of Religious Studies and principal of the Monroe Hill Residential College. He is the author of numerous articles and several books on biomedical ethics, including Principles of Biomedical Ethics (with Tom L. Beauchamp), Priorities in Biomedical Ethics, and Who Should Decide? Paternalism in Health Care. Formerly vice chairman of the National Task Force on Organ Transplantation, he serves on the Board of Directors of the United Network for Organ Sharing and is a member of the Recombinant DNA Advisory Committee, the Human Gene Therapy Subcommittee, and the Biomedical Ethics Advisory Committee. He is a fellow of the American Academy of Arts and Sciences and of the Hastings Center, and he has been the Joseph P. Kennedy, Sr., Professor of Christian Ethics at Georgetown University and a visiting professor at the University of Chicago Divinity School and Princeton University. He received his B.A. from Guilford College, his B.D. from Yale Divinity School, and his M.A. and Ph.D. from Yale University. BARTON CHILDS is Emeritus Professor of Pediatrics at The Johns Hopkins University School of Medicine. He obtained his M.D. degree at Johns Hopkins and trained there in pediatrics. His education in genetics was obtained at University College, London. Dr. Childs was chairman of the National Research Council committee on Genetic Screening in 1972-1975. FRANCIS S. COLLINS is Director of the National Center for Human Genome Research at the National Institutes of Health. He was formerly a Howard Hughes Medical Institute investigator and professor in the Departments of Internal Medicine and Human Genetics at the University of Michigan School of Medicine in Ann Arbor. Dr. Collins pioneered the development of positional cloning, which utilizes the inheritance pattern of a disease within families to pinpoint the location of a gene. He and his colleagues have used the technique to isolate the genes for cystic fibrosis, neurofibromatosis type 1, and Huntington disease. Dr. Collins received a Ph.D. degree in physical chemistry from Yale University and an M.D. degree from the University of North Carolina School of Medicine. Dr. Collins is a member of the National Academy of Sciences and the Institute of Medicine. He is also a member of the Board of Directors of the American Society of Human Genetics, the American Federation for Clinical Research, the American Society for Clinical Investigation, the Association of American Physicians, and sits on the executive council of the International Human Genome Organization. He serves as an associate editor for several publications. P. MICHAEL CONNEALLY is Distinguished Professor of Medical and Molecular Genetics and of Neurology at Indiana University Medical Center, Indianapolis, Indiana. He obtained his Ph.D. degree at the University of Wisconsin in 1962.
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Assessing Genetic Risks: Implications for Health and Social Policy He serves on several editorial boards and also on the scientific advisory boards of eight lay organizations for specific genetic disorders. Dr. Conneally has been involved in the genetic mapping of numerous human inherited diseases and has trained a number of human population geneticists. HELEN R. DONIS-KELLER is Professor of Surgery and Genetics in the Department of Surgery at Washington University School of Medicine in St. Louis, Missouri. She is also Director of the Division of Human Molecular Genetics in the Surgery Department. She obtained her Ph.D. degree in biochemistry and molecular biology at Harvard University in 1979. Her research interests include mapping genes responsible for human diseases, such as cystic fibrosis and multiple endocrine neoplasia type 2. She has also been active in the development of predictive DNA tests for these and other disorders. Prior to joining Washington University, she was Director of the Department of Human Genetics at Collaborative Research Incorporated and a former Assistant Director for Research at Biogen Incorporated. NORMAN C. FOST is Professor and Vice Chairman of Pediatrics and Director of the Program in Medical Ethics at the University of Wisconsin School of Medicine. He is a graduate of Princeton (A.B., 1960), Yale (M.D., 1964), and Harvard (M.P.H., 1973). He is Past-Chairman of the American Academy of Pediatrics Committee on Bioethics and was a member of the White House Interagency Task Force on Health Reform. At the University of Wisconsin he is Director of the Residency Training Program, Chairman of the Hospital Ethics Committee, Chairman of the Institutional Review Board, and heads the Child Protection Team. His interest in ethical issues in genetics goes back to 1973 when he was a consultant to the National Academy of Sciences Committee on Screening for Inborn Errors of Metabolism, whose report, Genetic Screening: Programs, Principles and Research, was published in 1975. He was a member of the National Institutes of Health Workshop on Population Screening for the Cystic Fibrosis Gene, a member of the American Society of Human Genetics (ASHG) Committee on Cf Heterozygote Detection, and Cochair of the ASHG Committee on Insurance. Dr. Fost is the author of numerous publications on ethical and legal issues in genetics, including recent papers with Benjamin Wilfond on the social implications of the discovery of the gene for cystic fibrosis. NEIL A. HOLTZMAN is Professor of Pediatrics at the Johns Hopkins University School of Medicine and has joint appointments in Health Policy and Management and in Epidemiology at the School of Hygiene and Public Health. Dr. Holtzman conducted biochemical research on genetic diseases before turning to policy studies dealing primarily with genetic screening and technology diffusion. He also organized the Pediatric Genetics Unit at the Johns Hopkins Hospital and was Coordinator for Hereditary Disorders Services for the Maryland Department of
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Assessing Genetic Risks: Implications for Health and Social Policy Health and Mental Hygiene. He served as a Senior Analyst at Office of Technology Assessment of the U.S. Congress. In 1989, Dr. Holtzman's book Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era, was published by the Johns Hopkins University Press. Dr. Holtzman currently has grants from the NIH Ethical, Legal, and Social Implications (ELSI) component of the Human Genome Project to study the diffusion of genetic technologies. MICHAEL M. KABACK is Professor of Pediatrics and Reproductive Medicine and Chief of the Division of Medical Genetics (Peds) at the University of California at San Diego School of Medicine. He also serves as the Director of the State of California Tay-Sachs Disease Prevention Program, past president of the Western Society for Pediatric Research, past president ( 1991 ) of the Society of Human Genetics, and North American Editor of ''Prenatal Diagnosis." Dr. Kaback's major research interests include: the application of genetic technologies to the control of human genetic disease, psychosocial issues in genetic screening, and genotype-phenotype correlations in the lysosomal storage disorders. MARY-CLAIRE KING is Professor of Epidemiology and Human Genetics at the University of California at Berkeley. Her research centers on the genetics and epidemiology of breast cancer and other common chronic diseases, pedigree analysis, and human and primate molecular evolution. Dr. King received her B.A. from Carleton College and her Ph.D. in genetics from the University of California at Berkeley. She is a member of the American Epidemiological Society, the American Society of Human Genetics, and the Society for Epidemiological Research. PATRICIA A. KING is a Professor of Law at Georgetown University Law Center. She is a graduate of Wheaton College (1963) and Harvard Law School (1969). She specialized in family law and the relationship between biomedical ethics, law, and public policy, particularly related to reproduction. Professor King has served on numerous public bodies concerning biomedicine and public policy. They include the National Commission for Protection of Human Subjects of Biomedical and Behavioral Research, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, and the Human Fetal Tissue Transplantation Research Panel. Professor King is a member of the Institute of Medicine. ALEXANDER LEAF is Jackson Professor of Medicine, Emeritus, Harvard Medical School and former Chief of Medicine, Massachusetts General Hospital and former Ridley Watts Professor of Preventive Medicine and Chairman, Department of Preventive Medicine and Clinical Epidemiology, Harvard Medical School. He is currently a Distinguished Physician at the West Roxbury VA Medical Center. He is a member of the National Academy of Sciences and of the
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Assessing Genetic Risks: Implications for Health and Social Policy Institute of Medicine. Professor Leaf has participated on several NAS and IOM committees. He has authored over 300 scientific and policy articles and books. PETER LIBASSI is Dean of the Barney School of Business and Public Administration at the University of Hartford. His prior careers have included business, law, nonprofit and government service, including: Senior Vice President, Travelers Insurance Company; General Counsel, U.S. Department of Health, Education, and Welfare; Deputy Staff Director, U.S. Commission on Civil Rights; and Executive Director, National Urban Coalition. He has served on several national and state commissions on health, aging, and public policy, including: the Department of Health and Human Services Secretary's Task Force on Long-Term Care; Governor's Commission on Long-Term-Care Insurance; National Academy of Sciences Committee on an Aging Society; Pew Commission on Health Professionals; and Commonwealth Fund Commissions on Elderly Living Alone and on Health Care Reform. He is a graduate of Colgate University and Yale Law School. ARNO G. MOTULSKY is Professor of Medicine and Genetics at the University of Washington, Seattle, Washington. He obtained his M.D. degree at the University of Illinois in 1947, and trained in internal medicine and medical genetics. He was President of the American Society of Human Genetics, and editor of the American Journal of Human Genetics. He serves on multiple editorial boards. Dr. Motulsky is a member of the National Academy of Sciences and the Institute of Medicine. In the 1970s he participated in the NRC committee on genetic screening and in the 1980s he served on the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. He has received a variety of awards for his work. Dr. Motulsky has authored over 300 scientific publications, is coauthor of an influential textbook in his field, and has trained many medical geneticists. ROBERT F. MURRAY, JR., is Chief of the Division of Medical Genetics in the Department of Pediatrics and Child Health, and Professor of Pediatrics, Medicine, and Oncology at Howard University College of Medicine. He is also Chairman of the Graduate Department of Genetics and Human Genetics in the Graduate School of Arts and Sciences at Howard University. He is a member of the Institute of Medicine and has served on the IOM Council and also on several National Research Council and IOM task forces and working groups. He is a fellow and member of the Board of Directors of the Hastings Center on Bioethics, and a fellow of the American Association for the Advancement of Science. He has served on the Recombinant DNA Advisory Committee (RAC) and the Human Gene Therapy Subcommittee of the RAC and the Working Group on Ethics, Law, and Social Issues (ELSI) of the National Center for Human Genome Research at NIH. He is coauthor with Dr. James Bowman of "Genetic Variation and Disorders
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Assessing Genetic Risks: Implications for Health and Social Policy in Peoples of African Origin," published in 1990 by Johns Hopkins University Press and has coedited two other books on mental retardation and genetic counseling. Dr. Murray is a graduate of Union College (B.S.) and the University of Rochester School of Medicine (M.D.). He is board certified in both internal medicine and medical genetics. MARK A. ROTHSTEIN is Law Foundation Professor of Law and Director of the Health Law and Policy Institute of the University of Houston. He is a graduate of the University of Pittsburgh (B.A., 1970) and Georgetown University Law Center (J.D., 1973). Professor Rothstein specializes in the ethical and legal issues raised by the use of medical information in the nonclinical setting, including employment and insurance. He is the author of numerous books and articles on these and related issues. Professor Rothstein also has served as an adviser to the Office of Technology Assessment of the United States Congress, the U.S. Department of Energy, American Medical Association, and other organizations. CLAUDIA T. WEICKER serves on the boards of the National Mental Health Association, the Stewart B. McKinney Foundation, and the National Abortion Rights Action League. She serves on the advisory boards of the University of Connecticut Children's Cancer Fund and the Department of Psychiatry at the Yale University School of Medicine. She was Staff Director of the Subcommittee on Appropriations and then Staff Director of the Subcommittee on Labor, Health, Human Services and Education of the U.S. Senate. She is a graduate of Hartford College for Women and of Marymount College. Since 1991, when her husband, Lowell P. Weicker, Jr. became Governor of Connecticut, she has been an advocate on health and children's issues, and has served as the honorary chairwoman of the Connecticut Commission on Children's "Kids Count" Campaign, which emphasizes school readiness and preventive health care for the state's children. NANCY SABIN WEXLER is Professor of Clinical Neuropsychology in the Departments of Neurology and Psychiatry at Columbia University and President of the Hereditary Disease Foundation, Santa Monica, California. She received an A.B. degree cum laude from Radcliffe College in 1967, and a Ph.D. in clinical psychology from the University of Michigan in 1974. Beginning in 1968, Dr. Wexler's most important scientific contribution is her work on Huntington disease. For the last 13 years she and her colleagues have studied the disease and collected blood samples from members of the world's largest family with Huntington disease in Venezuela. These samples led to the localization of the Huntington disease gene in 1983 and the discovery of the gene in March 1993. Dr. Wexler is a member of the Program Advisory Committee of the National Center for Human Genome Research at the National Institutes of Health (NIH). She chairs the Joint NIH/DOE Ethical, Legal, and Social Implications Working Group on the Human Genome (ELSI) and co-chairs the Ethics Committee of the Human
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Assessing Genetic Risks: Implications for Health and Social Policy Genome Organization (HUGO). Within the last two years, Nancy Wexler was elected to the Board of Directors, American Association for the Advancement of Science, awarded an Honorary Doctor of Humane Letters from New York Medical College, an Honorary Doctor of Science from the University of Michigan, the Distinguished Service Award from the National Association of Biology Teachers, and the Albert Lasker Public Service Award.
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