WYLIE BURKE (Steering Committee Chair) is professor and chair of the Department of Bioethics and Humanities at the University of Washington. She is also adjunct professor of medicine and epidemiology and a member of the Fred Hutchinson Cancer Research Center. Previously, she was associate director of the Internal Medicine Residency Program and founding director of the Women’s Health Care Center at the University of Washington. She has been a visiting scientist at the Centers for Disease Control and Prevention and an international fellow at the National Health Service in Cambridge, United Kingdom. Her research addresses the social, ethical, and policy implications of genetic information. She is a member of the Institute of Medicine and the Association of American Physicians and a past president of the American Society of Human Genetics. She has a Ph.D. in genetics and an M.D. from the University of Washington, where she also completed a residency in internal medicine.
BARBARA BIESECKER is head of the Genetic Services Research Unit and an associate investigator in the Social and Behavioral Research Branch of the National Human Genome Research Institute. She also is director of the Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program. Her research addresses how genetic counseling can improve people’s decision-making and coping strategies, and is focused on the role of uncertainty in adapting to the lack of a diagnosis for a rare condition, using genomic sequence information, distinguishing predictors of decision making to enhance informed choice,
and assessing models of informed consent to undergo exome sequencing. She has an M.S. from the University of Michigan and a Ph.D. from King’s College, London.
LESLIE G. BIESECKER (Steering Committee Member) is chief and senior investigator of the Genetic Disease Research Branch at the National Human Genome Research Institute and director of the institute’s physician scientist development program. His research focuses on understanding the relationship of genomic variation to health and disease, and his lab is currently engaged in studies of rare disorders of development and growth and of new approaches to hypothesis-generating clinical genomics research and clinical genome sequencing research. He has served on the board of directors of the American Society of Human Genetics and on the advisory board for both the World Trade Center 9/11 victim identification project and the Hurricane Katrina victim identification project. He has a B.S. from the University of California, Riverside, and an M.D. from the University of Illinois College of Medicine. He was trained in pediatrics at the University of Wisconsin and in medical genetics at the University of Michigan and is board certified in both of these specialties.
BENJAMIN BERKMAN is deputy director of the bioethics core at the National Human Genome Research Institute and a faculty member in the Department of Bioethics at the National Institutes of Health. He was formerly the deputy director of the O’Neill Institute for National and Global Health Law at Georgetown Law School, where he continues to serve as an adjunct professor. His current work focuses on the legal and ethical issues associated with genomic research, genetic information privacy, public health emergency preparedness, and research involving vulnerable populations. He has worked with the World Health Organization and the Centers for Disease Control and Prevention. He has a bachelor’s degree in the history of science and medicine from Harvard University and a J.D. and an M.P.H. from the University of Michigan.
LAURA BESKOW is an associate professor in the Duke Clinical Research Institute. She is also a faculty associate in the Trent Center for Bioethics, Humanities & History of Medicine, and a member of the ethics core of the Duke Translational Medicine Institute. Previously, she was associate director of the Stanford University Program in Genomics, Ethics, and Society, and a career development awardee in Office of Genetics and Disease Prevention at the Centers for Disease Control and Prevention. Her work focuses on ethics and policy issues in research, particularly human subject issues in large-scale genomic and translational research. She is a member of the Subpart A Subcommittee of the Secretary’s Advisory Com-
mittee for Human Research Protections at the U.S. Department of Health and Human Services and a member of the editorial advisory board for the Journal of Empirical Research on Human Research Ethics. She has a B.S. in nutrition from Iowa State University, an M.P.H with a concentration in health law from Boston University, and a Ph.D. in health policy and administration, with a minor in epidemiology, from the University of North Carolina at Chapel Hill.
JEFFREY BOTKIN (Steering Committee Member) is professor of pediatrics and adjunct professor of human genetics at the University of Utah, where he is chief of the Division of Medical Ethics and Humanities in the Department of Internal Medicine. He is also the university’s associate vice president for research integrity. His research and publications are focused on the ethical, legal, and social implications of genetic technology with a particular emphasis on research ethics, genetic testing for cancer susceptibility, newborn screening, and prenatal diagnosis. Formerly, he was chair of the Committee on Bioethics for the American Academy of Pediatrics and a member of the Secretary’s Advisory Committee on Human Research Protections at the U.S. Department of Health and Human Services (DHHS). He currently is a member of the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children at DHHS. He chairs the Embryonic Stem Cell Working Group at the National Institutes of Health and is a member of the Pediatric Ethics Advisory Committee of the Food and Drug Administration. He is an elected fellow of the Hastings Center. He has a B.A. from Princeton University, an M.D. from the University of Pittsburgh, and an M.P.H. from Johns Hopkins University.
MILDRED K. CHO (Steering Committee Member) is professor of pediatrics in the Division of Medical Genetics of the Department of Pediatrics at Stanford University, associate director of the Stanford Center for Biomedical Ethics, and director of the Center for Integration of Research on Genetics and Ethics. Previously, she was an assistant professor of bioethics in the Center for Bioethics and the Department of Molecular and Cellular Engineering at the University of Pennsylvania School of Medicine. Her current research examines ethical and social issues in research on the genetics of behavior, the human microbiome, human genetic variation and natural selection. She is a member of the national advisory boards of the National Human Genome Research Institute and the Genome X-Prize and on the board of reviewing editors of Science. She has also served as a member of the working group on synthetic genomes for the U.S. Department of Energy. She has a B.S. in biology from the Massachusetts Institute of Technology and a Ph.D. from the Stanford University Department of Pharmacology.
ELLEN WRIGHT CLAYTON (Steering Committee Member) is the Craig-Weaver professor of pediatrics and professor of law at Vanderbilt University, where she cofounded and directed the Center for Biomedical Ethics and Society. Her research has focused on the ethical, legal, and social issues (ELSI) raised by genetics and genomics research, genetic testing for children and adults, guidelines to promote the inclusion of children in clinical trials, and the translation of new findings into clinical care. She has served on the National Advisory Council for Human Genome Research, as cochair of the ELSI Working Group of the International HapMap Project, and on the American Society of Human Genetics Social Issues Committee. She was awarded the David P. Rall Medal from the Institute of Medicine in 2013. She has a B.S. in zoology from Duke University, an M.S. in biology from Stanford University, a J.D. from Yale Law School, and an M.D. from Harvard Medical School. She completed a residency in pediatrics at the University of Wisconsin.
EILEEN M. CRIMMINS (Steering Committee Member) holds the AARP chair in gerontology at the University of Southern California (USC) and leads the Center on Biodemography and Population Health, a joint activity of USC and the University of California, Los Angeles. Her research focuses on the connections between socioeconomic factors and life expectancy and other health outcomes, on healthy life expectancy in older populations, and on male/female differences in health and mortality, as well as differences by gender in life stresses and strains. She is an elected member of the Institute of Medicine. She has an M.A. and a Ph.D. in demography, both from the University of Pennsylvania.
KELLY EDWARDS is an associate professor in the Department of Bioethics and Humanities at the University of Washington School of Medicine and a core faculty member of the Institute for Public Health Genetics. She serves as director of the Ethics and Outreach Core for the Center for Ecogenetics and Environmental Health, codirector of the Regulatory Support and Bioethics Core for the Institute for Translational Health Sciences (CTSA), and lead investigator with the Center for Genomics and Healthcare Equality, all at the University of Washington. Her special interests include community-based research practices, biobank governance, environmental justice, everyday ethics in research practice, feminist and narrative approaches to bioethics, and the integration of ethics into training programs, public conversations about science, and public policy. She has been a member of the International “Making Connections” consortium, and she cochairs the Biobank Working Group within the CTSA Consortium. She has an M.A. in medical ethics and a Ph.D. in the philosophy of education from the University of Washington, Seattle.
CAROLYN TUCKER HALPERN is professor of maternal and child health in the Gillings School of Global Public Health at the University of North Carolina at Chapel Hill. She is deputy director/co-investigator of the National Longitudinal Study of Adolescent Health (Add Health) Program and director of the Carolina Population Center training program. Her research interests involve understanding healthy sexual development and the implications of adolescent experiences for developmental and demographic processes into adulthood, particularly as these relate to biopsychosocial models of sexual and romantic relationships. She is the principal investigator of a five-year National Institute of Child Health and Human Development-based project examining sexual trajectories from adolescence into adulthood, and a co-investigator on several National Institutes of Health-funded projects evaluating interventions to reduce HIV risk in adolescents in sub-Saharan Africa. She has a B.S. in psychology and an M.A. and a Ph.D. in developmental psychology, all from the University of Houston–Central Campus.
TINA HAMBUCH is director of clinical services at Illumina. She launched a California-certified clinical genetic molecular biologist scientist training program in which she serves as education coordinator and director. Previously, she was a postdoctoral fellow at the Centers for Disease Control and Prevention (CDC) and was on the faculty of the University of Munich. She is currently active in the development and validation of genetic testing as well as clinical tools for physician support and education. She is a member of the American Society of Human Genetics and serves on clinical genomics working groups for the CDC, Association for Molecular Pathology, and Clinical Laboratory Standards Institute. She has a bachelor’s degree from the University of California, Riverside, and a Ph.D. from the University of California, Berkeley. She is board certified by the American Board of Medical Genetics in clinical molecular genetics.
ROBERT M. HAUSER is executive director of the Division of Behavioral and Social Sciences and Education at the National Research Council and Vilas Research Professor and Samuel Stouffer professor of sociology (emeritus) at the University of Wisconsin–Madison. Previously, he directed the university’s Center for Demography of Health and Aging, the Institute for Research on Poverty, and the Center for Demography and Ecology, and he has been an investigator on the Wisconsin Longitudinal Study since 1969. His current research interests include statistical methodology, trends in educational progression and achievement among American racial and ethnic groups, the uses of educational assessment as a policy tool, and changes in socioeconomic standing, cognition, health, and well-being across the life course. He is a member of the National
Academy of Sciences, the American Academy of Arts and Sciences, the National Academy of Education, and the American Philosophical Society. He has a B.A. in economics from the University of Chicago and an M.A. and a Ph.D. in sociology from the University of Michigan.
GAIL JARVIK is the Arno G. Motulsky endowed chair in medicine, joint professor of medicine and genome sciences, and head of the Division of Medical Genetics at the University of Washington Medical Center (UWMC). She also is an adjunct professor of epidemiology at UWMC, affiliate member of the Fred Hutchinson Cancer Research Center, and Pew Scholar in the biomedical sciences. She has chaired the Genomics, Computational Biology and Technology study section at the National Institutes of Health. Her research focuses on the inheritance of diseases of complex etiology such as cancer, heart disease, stroke, and immune disorders; genome-wide association studies of phenotypes from clinical electronic medical records; and exomic analysis of lipid disorders in large families. She is a practicing clinician in internal medicine and medical genetics. She has an M.D. from the University of Iowa and a Ph.D. in genetics from the University of Michigan.
STEVEN JOFFE is vice chair of medical ethics, Emanuel and Robert Hart associate professor of medical ethics and health policy, and a pediatric oncologist and bioethicist at the University of Pennsylvania Perelman School of Medicine. He currently directs the Penn Fellowship in Advanced Biomedical Ethics, chairs the Children’s Oncology Group Bioethics Committee, and serves as a member of the Pediatrics Ethics Subcommittee of the Food and Drug Administration. His research addresses the roles and responsibilities of principal investigators in multicenter randomized trials, accountability in the clinical research enterprise, children’s capacity to engage in research decisions, return of individual genetic results to participants in epidemiologic cohort studies, and the integration of whole-exome sequencing technologies into the clinical care of cancer patients. He has an A.B. in fine arts from Harvard College, an M.D. from the University of California, San Francisco School of Medicine, and an M.P.H in epidemiology from the University of California, Berkeley.
SHARON KARDIA is director of the Public Health Genetics Program and of the Life Sciences and Society Program, professor of epidemiology, and senior associate dean for administration at the University of Michigan. Her main research interests involve the genetic epidemiology of common chronic diseases and their risk factors. She is particularly interested in gene-environment and gene-gene interactions and in developing novel analytical strategies to understand the complex relationship between
genetic variation, environmental variation, and risk of common chronic diseases. Her research utilizes genomic, epigenomic, transcriptomic, and proteomic measures on large epidemiological cohorts. She has an M.A. in statistics and a Ph.D. in human genetics from the University of Michigan.
MUIN KHOURY is founding director of the Office of Public Health Genomics at the Centers for Disease Control and Prevention. He has served the National Cancer Institute (NCI) as senior advisor in public health genomics, and he currently leads the NCI Epidemiology and Genomics Research Program. He is also an adjunct professor in the Department of Epidemiology and the Department of Environmental and Occupational Health at Emory University Rollins School of Public Health, and an associate in the department of epidemiology at the Johns Hopkins University Bloomberg School of Public Health. He has a B.S. in biology/chemistry and a medical degree from the American University of Beirut, Lebanon, and a Ph.D. in human genetics/genetic epidemiology from Johns Hopkins University. He is board certified in medical genetics.
JENNIFER H. MADANS is associate director for science at the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention, where she is responsible for the overall plan and development of NCHS’s data collection and analysis programs. Her research interests include data collection methodology, measurement of health and functioning, health services, and development of internationally comparable measures of disability and health. She has directed two major national longitudinal studies (the National Health and Nutrition Examination Survey I Epidemiologic Follow-up Study and the National Nursing Home Follow-up Study), and participated in the redesign of the National Health Interview Survey questionnaire. She has also served as adjunct associate professor in the Demography and Community and Family Medicine Departments at Georgetown University. She is a fellow of the American Statistical Association and a member of the International Statistical Institute. She has a B.A. from Bard College, and an M.A. and a Ph.D. in sociology from the University of Michigan.
MARTHA MCCLINTOCK is the David Lee Shillinglaw distinguished service professor in psychology at the University of Chicago. She is the founder of the Institute for Mind and Biology, codirector of the Center for Interdisciplinary Health Disparities Research, and she holds joint appointments in the Departments of Psychology and Comparative Human Development. Her current research interests include the interaction between behavior and reproductive endocrinology and immunology, hormonal and neuroendocrinal mechanisms of behavior, and the psychosocial ori-
gins of malignant and infectious disease. She is a member of the Institute of Medicine and the American Academy of Arts and Sciences, as well as a fellow of the American Association for the Advancement of Science, the Animal Behavior Society, American Psychological Society, American Psychological Association, and International Academy of Sex Research. She has a Ph.D. from the University of Pennsylvania.
JOHN (JACK) MOYE is a medical officer with the National Children’s Study and a pediatrician with the National Institute of Child Health and Human Development (NICHD). His background is in clinical and laboratory medicine and public health with an emphasis on the prevention and control of communicable and chronic diseases, including sexually transmitted diseases and HIV/AIDS. His research interests include HIV virology and immunology, laboratory quality assurance, and growth and nutrition. He also is involved in clinical trials conducted as part of the NICHD Domestic and International Pediatric/Perinatal HIV Clinical Studies Network, Women and Infants Transmission Study (for which he chairs the Clinical Working Group), and Pediatric HIV/AIDS Cohort Study.
KATHRYN PORTER is director of the Division of Health and Nutrition Examination Surveys (DHANES) at the National Center for Health Statistics. She is responsible for managing the planning and implementation of the ongoing National Health and Nutrition Examination Survey and overseeing the related analytic research activities. She is a captain in the U.S. Public Health Service Commissioned Corps and a former epidemic intelligence service officer and medical officer in the Operations Branch of DHANES. She is a member of the American Medical Association, the American Public Health Association, and the American College of Preventive Medicine, and she is board certified in preventive medicine and public health. She has an M.D. from the Medical College of Virginia and an M.S. in preventive medicine and epidemiology from the University of Maryland.
HENRY S. RICHARDSON is senior research scholar at the Kennedy Institute of Ethics and professor of philosophy at Georgetown University. He has worked principally on the nature of reasoning, both individual and collective. He has twice been a visiting scholar in the Department of Bioethics at the National Institutes of Health, and he has participated in research-ethics training courses organized by that department in Uganda and Tanzania. He was appointed by the director general of UNESCO as a member of the World Commission on the Ethics of Scientific Knowledge and Technology, and he currently serves as the editor of Ethics. He has a
B.A. from Harvard College and a J.D., an M.P.P., and a Ph.D. in philosophy, all from Harvard University.
DAVID WEIR is research professor in the Survey Research Center and a research affiliate of the Population Studies Center at the University of Michigan. He is director and principal investigator of the national Health and Retirement Study. His current research interests include the measurement of health-related quality of life, the use of cost-effectiveness measures in health policy and medical decision making, the role of supplemental Medicare health insurance, the effects of health, gender, and marital status on economic well-being in retirement, and the effects of early life experience on longevity and health at older ages. He has a B.A. in history from the University of Michigan and a Ph.D. in economics from Stanford University.
MARC WILLIAMS is a pediatric geneticist and director of the Genomic Medicine Institute for Geisinger Health System in Danville, PA. He is the coprincipal investigator of the Geisinger Electronic Medical Records in Genomics (eMERGE) project, principal investigator of a Patient-Centered Outcomes Research Institute contract on how best to communicate results to patients undergoing whole-genome sequencing for undiagnosed diseases, and medical director of the Geisinger clinical whole-genome sequencing project. He is a director of the board of the American College of Medical Genetics and has been the organization’s elected vice-president of clinical genetics. He also is a member of the advisory panel for the American Academy of Pediatrics (AAP) Genetics in Primary Care Institute and a member of the AAP section on genetics and birth defects. He has a B.S. in chemistry and an M.D. from the University of Wisconsin–Madison.
SUSAN M. WOLF is the McKnight Presidential professor of law, medicine, and public policy and the Faegre Baker Daniels professor of law at the University of Minnesota. She is also professor of medicine in the university’s medical school and a faculty member in the university’s Center for Bioethics. She is the founding chair of the Consortium on Law and Values in Health, Environment and the Life Sciences and the founding director of the joint degree program in law, science, and technology. She is a member of the Institute of Medicine and the American Law Institute and a fellow of the American Association for the Advancement of Science and The Hastings Center. She is faculty advisor to the Minnesota Journal of Law, Science and Technology and has served on many editorial boards. She has a B.A. from Princeton University and a J.D. from Yale Law School.