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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary Appendix B Speaker Biosketches Wylie Burke, M.D., Ph.D. (Chair), is Professor and Chair of the Department of Medical History and Ethics at the University of Washington. Dr. Burke was a member of the Department of Medicine at the university from 1983 to 2000, where she served as Associate Director of the Internal Medicine Residency Program from 1988 to 1994 and as founding Director of the Women’s Health Care Center from 1994 to 1999. She was appointed Chair of the Department of Medical History in 2000. She is also an Adjunct Professor of Medicine and Epidemiology and an associate member of the Fred Hutchinson Cancer Research Center. She was a visiting scientist at the Centers for Disease Control and Prevention (CDC) in 1998 and is a Fellow of the American College of Physicians. She has served on the National Institutes of Health (NIH) National Advisory Council for Human Genome Research and the Secretary’s Advisory Committee on Genetic Testing. Dr. Burke’s research addresses the social, ethical, and policy implications of genetic information, including genetic test evaluation, the development of practice standards for genetically based services, and genetics education for health professionals. She is also the director of the University of Washington Center for Genomics and Healthcare Equality, a Center of Excellence in Ethical, Legal, and Social Implications research funded by the National Human Genome Research Institute (NHGRI). She received a Ph.D. in Genetics and an M.D. from the University of Washington and completed a residency in Internal Medicine at the University of Washington. She was a Medical Genetics Fellow at the University of Washington from 1981 to 1982.
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary Alfred O. Berg, M.D., M.P.H., has been at the University of Washington since 1977. Dr. Berg was elected to the Institute of Medicine (IOM) in 1996. In 2004 he received the Thomas W. Johnson Award for career contributions to family medicine education from the American Academy of Family Physicians, and in 2008 he received the F. Marian Bishop Leadership Award from the Society of Teachers of Family Medicine Foundation, recognizing his contribution to enhancing the academic credibility of family medicine. He has served on many national expert panels using evidence-based methods to develop clinical guidelines, including chair of the U.S. Preventive Services Task Force, co-chair of the otitis media panel convened by the then-Agency for Health Care Policy and Research, chair of the CDC Sexually Transmitted Diseases Treatment Guidelines panel, member of the American Medical Association/CDC panel producing Guidelines for Adolescent Preventive Services, member of the IOM’s Immunization Safety Review Committee, and chair of the IOM’s Committee on the Treatment of Post-Traumatic Stress Disorder. He currently chairs the CDC panel on Evaluation of Genomic Applications in Practice and Prevention, and the NIH State-of-the-Science Conference on Family History in Primary Care. He received his M.D. at Washington University in St. Louis and his M.P.H. at the University of Washington. He completed residencies in Family Medicine and in General Preventive Medicine and Public Health. Ralph G. Brindis, M.D., M.P.H., FACC, FSCAI, is the Senior Adviser for Cardiovascular Disease for Northern California Kaiser and a Clinical Professor of Medicine at the University of California–San Francisco (UCSF). Dr. Brindis is a practicing interventional cardiologist with an active practice in consultative cardiology. His major interest in process measures and outcomes assessment in cardiovascular care has led to helping to create and implement various Cardiovascular Guidelines for Northern California Kaiser. Dr. Brindis currently serves as the Vice President of the American College of Cardiology (ACC). He has served previously as the ACC Governor of Northern California and as past president of the California Chapter of the ACC. Dr. Brindis is the current Chief Medical Officer and Chair of the ACC National Cardiovascular Data Registry Management Board, which oversees six cardiovascular national registries. He also chairs the ACC Appropriateness Oversight Task Force developing appropriateness criteria for noninvasive testing and coronary revascularization procedures in cardiovascular disease. He is the past chair of the ACC Quality Strategic Directions Committee. Dr. Brindis was the 2007 recipient of the national ACC Distinguished Fellow Award. He is also an active volunteer in the AHA. He has served on the California Affiliate Board and previously as President and member of the Board of the AHA San Francisco Division. He now serves on the Steering Committee of the national AHA Quality of Care and Outcomes
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary Conference. Dr. Brindis sits on the Cardiac Advisory Board of the State of California OSHPD initiative overseeing public reporting of hospital- and physician- specific coronary artery bypass graft (CABG) mortality. He also served on the National Blue Ribbon Advisory Committee for Cardiac Care for the Veterans Administration and currently serves on the VA Hospital National CABG Quality Oversight Committee. Dr. Brindis has more than 100 publications in national peer-reviewed cardiovascular journals. Dr. Brindis graduated from the Massachusetts Institute of Technology in 1970, then earned an M.P.H. from the University of California–Los Angeles (UCLA) in 1972. He earned his M.D. from Emory Medical School, summa cum laude, in 1977 with elected membership in Alpha Omega Alpha. His graduate medical training was performed at UCSF as a resident and chief resident in Internal Medicine and also as a Cardiology Fellow. Robert L. Davis, M.D., M.P.H., is senior investigator and director of the Kaiser Permanente Georgia, Center for Health Research/Southeast (CHR/SE). He leads a team of investigators and staff in a portfolio of funded studies involving pharmacogenomics and pharmacoepidemiology, health services research, clinical trials of vaccines and pharmaceuticals, and prevention and epidemiology of chronic diseases. Dr. Davis’s training included receiving his M.D. from the University of California–San Diego, a residency in pediatrics at Oregon Health Sciences University, and an M.P.H. in Epidemiology from the University of Washington. After earning his M.P.H. in 1993, he joined the faculties of both Epidemiology and Pediatrics at the University of Washington’s Schools of Public Health and Medicine. After a sabbatical in 2004 with the CDC Office of Public Health Genetics, Dr. Davis became the Director of the CDC Immunization Safety Office. In 2007 became Director of CHR/SE in Atlanta, GA, where he currently focuses on genetics research in diagnosis and treatment. He collaborates with the HMO Research Network and the NIH-funded Pharmacogenomics Research Network in studies of human genetic variation and response to commonly used medication for diabetes and heart disease. Dr. Davis has published more than 110 articles and 8 book chapters, and serves as a reviewer for 14 journals. Geoffrey Ginsburg, M.D., Ph.D., is Professor of Medicine and Director of the Center for Genomic Medicine. Previously, Dr. Ginsburg was with Millennium Pharmaceuticals in Cambridge, MA, where he was vice president of molecular and personalized medicine. At Millennium, Ginsburg was responsible for crafting strategy on the discovery of biomarkers, genetic characteristics that measure the effects or progress of a disease or condition and the use of those indicators for clinical prediction and diagnosis. Dr. Ginsburg developed and directed the preventive cardiology service at
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary Beth Israel Hospital in the late 1980s, and has served on the faculty of Harvard Medical School since 1990. In addition to his role in the Institute for Genomic Sciences and Policy, he is a member of the faculty in the Department of Medicine at Duke University Medical Center. Dr. Ginsburg received his M.D. and Ph.D. from Boston University. He completed his Clinical and Research Fellowships in Molecular Cardiology at Beth Israel Hospital and at Children’s Hospital in Boston. Sharon Kardia, Ph.D., is an Associate Professor of Epidemiology at the University of Michigan. She is Director of the Public Health Genetics Program, Co-Director of the Michigan Center for Genomics and Public Health, and Co-Director of the Life Sciences & Society Program housed in the University of Michigan School of Public Health. Dr. Kardia’s main research interests are in the genomic epidemiology of cardiovascular disease and its risk factors. She is particularly interested in gene–environment and gene–gene interactions, and in modeling complex relationships between genetic variation, environmental variation, and risk of common chronic diseases. Her work also includes using gene expression and proteomic profiles for molecular classification of tumors and survival analysis in lung and ovarian cancers. As a part of her Center activity, Dr. Kardia is also actively working on moving genetics into chronic disease programs in state departments of health. Dr. Kardia was a member of three National Academy of Science Committees (Genomics and the Public’s Health in the 21st Century; Assessing Interactions Among Social, Behavioral, and Genetic Factors and Health; and Applications of Toxicogenomics Technologies to Predictive Toxicology). Dr. Kardia received her Ph.D. in Human Genetics from the University of Michigan, was a Postdoctoral Fellow in the Department of Microbiology and Immunology, and continued postdoctoral work in the Department of Human Genetics. Sumitra Muralidhar, Ph.D., is Scientific Program Manager for the Genomic Medicine Program in the Biomedical and Clinical Research and Development services of the Office of Research and Development, Department of Veterans Affairs. Since the formal establishment of a Genomic Medicine Program by the VA Secretary in 2006, she has been involved in establishing the framework for a genomics research program within the Office of Research and Development, including policy development, infrastructure development, and scientific review process development for genomics. She serves as the designated federal officer for the Genomic Medicine Program Advisory Committee, a FACA committee that advises the VA Secretary on the application of genomics to improve health care for veterans. Dr. Muralidhar coordinated an interagency agreement with NHGRI to conduct a survey of veterans assessing their attitudes, knowledge, and expectations
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary of a genomic medicine program. She is also currently coordinating a project with NCHPEG on the development of a web-based educational tool on heritable colorectal cancer for health professionals within and outside the VA. Her previous positions include Health and Science Adviser to the U.S. Senate Committee on Veterans Affairs; Scientific Program Manager for Infectious Diseases and Immune Disorders at the Medical Research Service, VA; Assistant Professor of Microbiology and Immunology at Georgetown University; and postdoctoral training at the National Institute of Allergy and Infectious Diseases and the National Cancer Institute. Her research focused on oncogenic herpesviruses, specifically the Kaposi’s sarcoma virus. Dr. Muralidhar obtained her Master’s in Genetics from Bangalore University, India, and her Ph.D. in Microbiology from the University of Maryland–College Park. James M. Perrin, M.D., is Professor of pediatrics at Harvard Medical School and Director of the Division of General Pediatrics and the Massachusetts General Hospital (MGH) Center for Child and Adolescent Health Policy, a research and training center with an active fellowship program in general pediatrics. He is also Associate Chair of Pediatrics for Research at the Massachusetts General Hospital for Children. He chaired the American Academy of Pediatrics (AAP) Committee on Children with Disabilities and is past president of the Ambulatory Pediatric Association. For the AAP, he also co-chaired a committee to develop practice guidelines for attention deficit hyperactivity disorder and then a group advising the AAP on the implementation of the guidelines. His research has examined asthma, middle ear disease, children’s hospitalization, health insurance, and childhood chronic illness and disabilities, with a recent emphasis on quality of life and use of primary and subspecialty care for children and adolescents with chronic illness. He currently heads the Clinical Coordinating Center (based at the MGH) for the national Autism Treatment Network. He also directs the Evidence Working Group reporting to the Maternal and Child Health Bureau for the Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Dr. Perrin was the founding editor of Ambulatory Pediatrics, the journal of the Academic Pediatric Association. Dr. Perrin has served on the IOM Committees on Maternal and Child Health Under Health Care Reform, Quality of Long-TermCare Services in Home and Community-Based Settings, Enhancing Federal Healthcare Quality Programs, and Disability in America; the National Commission on Childhood Disability; and the Disability Policy Panel of the National Academy of Social Insurance (Chair, Children’s Committee). He received a Robert Wood Johnson Foundation Investigator Award in Health Policy Research. He also served as a member of the Health Care Technology study section of the then-Agency for Health Care Policy and Research and
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary of the National Advisory Council for the Agency for Healthcare Research and Quality. A graduate of Harvard College and Case Western Reserve University School of Medicine, he had his residency and Fellowship training at the University of Rochester and has also been on the faculties of the University of Rochester and Vanderbilt University. Kathryn A. Phillips, Ph.D., is Professor of Health Economics and Health Services Research and Director, Center for Translational and Policy Research on Personalized Medicine at UCSF. She holds appointments in the Department of Clinical Pharmacy, the Institute for Health Policy Studies, and the Comprehensive Cancer Center. Her research focuses on how health care is organized, delivered, and financed in the United States. She focuses on personalized medicine—targeting health care interventions to patients based on their genetics—and the impact of personalized medicine and targeted therapies on clinical care, health economics, and health policy. Her emphasis is on cancer screening and treatment. Dr. Phillips conducts cross disciplinary research across the basic, clinical, and social sciences and also across academia, industry, and government. She has served as an adviser to many government and industry groups as well as for start-up companies and venture capital firms. Dr. Phillips is Director of the UCSF Center on Translational and Policy Research on Personalized Medicine and leads an NIH research program on personalized medicine for colorectal and breast cancer as well as several foundation-funded studies on personalized medicine. She has published approximately 100 peer-reviewed articles in policy and clinical journals, including JAMA, New England Journal of Medicine, and Health Affairs and serves on the editorial board for four journals. Dr. Phillips holds degrees from the University of California–Berkeley, Harvard, and the University of Texas–Austin and spent 8 years working for the federal government in Texas and Washington, DC. Bruce Quinn, M.D., Ph.D., M.B.A., formerly the Contractor Medical Director for the California Medicare Part B program, is a senior policy strategist within the firm’s Government Strategies practice, where he focuses on Medicare coverage and payment matters for new technologies. He is a national leader in the areas of Medicare coverage and payment, claims and billing, and Medicare contractor reform processes. Dr. Quinn works with companies, providers, and venture capital investors to develop strategies for Medicare payment for new technologies. A large part of this work is on local and national coverage decisions. He focuses, in particular, on the emerging field of molecular diagnostics and personalized medicine. He also advises clients on Medicare Administrative Contractor reform and its effect on payment policy. Before running the Medicare Part B program, Dr. Quinn practiced in the Health & Life Sciences division of Accenture and was a
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary physician-scientist at Northwestern University School of Medicine, leading pathology research for Northwestern’s NIH-funded Alzheimer Research Center. He also held academic positions at New York University School of Medicine and UCLA Center for Health Sciences. Sharon Terry is President and Chief Executive Officer of the Genetic Alliance, a coalition of more than 600 disease-specific advocacy organizations working to increase capacity in these organizations and to leverage the voices of the millions of individuals and families affected by genetic conditions. She is the founding Executive Director of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). She is at the forefront of consumer participation in genetics research, services, and policy and serves as a member of many major governmental advisory committees on medical research, including the Food and Drug Administration Cellular, Tissue and Gene Therapies Advisory Committee and the Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. She is a member of the Board of Directors of the Biotechnology Institute and on the Advisory Board of the Johns Hopkins Genetics and Public Policy Center funded by the Pew Charitable Trusts. She is the chair of the Coalition for Genetic Fairness, composed of advocates, healthcare providers, and industry working to enact effective federal policy to prohibit genetic information discrimination. She is also chair of the Social Issues Committee of American Society of Human Genetics. In 2005, she received an honorary doctorate from Iona College for her work in community engagement and haplotype mapping. Ms. Terry is a cofounder of the Genetic Alliance BioBank and serves as president of its board. It is a centralized biological and data (consent/clinical/environmental) repository catalyzing translational genomic research on rare genetic diseases. The BioBank works in partnership with academic and industrial collaborators to develop novel diagnostics and therapeutics to better understand and treat these diseases. Along with the other co inventors of the gene associated with PXE (ABCC6), she holds the patent for the invention. She co-directs a 19-lab research consortium and manages 52 offices worldwide for PXE International. Steven Teutsch, M.D., Ph.D., is Chief Science Officer of the Los Angeles County Health Department. He recently retired from Merck & Co., Inc. In 1997 he joined the Outcomes Research and Management group, where he was responsible for scientific leadership in developing evidence-based clinical management programs, conducting outcomes research studies, and improving outcomes measurement to enhance quality of care. Prior to joining Merck he was Director of the Division of Prevention Research and Analytic Methods at CDC, where he was responsible for assessing the
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary effectiveness, safety, and the cost effectiveness of disease and injury prevention strategies. He has served as a member of that Task Force and the U.S. Preventive Services Task Force, which develops the Guide to Clinical Preventive Services. He currently chairs the Secretary’s Advisory Committee on Genetics Health and Society, and serves on America’s Health Information Community Personalized Health Care Workgroup, the Evaluation of Genomic Applications in Prevention and Practice (EGAPP) Workgroup, as well as IOM panels. Dr. Teutsch came to CDC in 1977, when he was assigned to the Parasitic Diseases Division and worked extensively on toxoplasmosis. He was then assigned to the Kidney Donor and subsequently the Kidney Disease Program. He joined the Epidemiology Program Office and became Director of the Division of Surveillance and Epidemiology, where he was responsible for CDC’s disease monitoring activities. He became Chief of the Prevention Effectiveness Activity in 1992. Dr. Teutsch has published more than 150 articles and 6 books in a broad range of fields in epidemiology, including parasitic diseases, diabetes, technology assessment, health services research, and surveillance. He received his undergraduate degree in Biochemical Sciences at Harvard University in 1970, an M.P.H. in Epidemiology from the University of North Carolina School of Public Health in 1973, and his M.D. from Duke University School of Medicine in 1974. Marc S. Williams, M.D., FAAP, FACMG, is an alumnus of the University of Wisconsin–Madison. He graduated with a B.S. in Chemistry in 1977 and an M.D. in 1981. He did a pediatric residency at the University of Utah. After 2 years of solo practice in Michigan, he joined the Riverside (CA) Medical Clinic as a general pediatrician and practiced there until 1991. From 1991 until joining Intermountain Healthcare, Dr. Williams was at the Gundersen Lutheran Medical Center in La Crosse, WI. Hired as a general pediatrician, he eventually pursued Fellowship training in Clinical Genetics, and was board certified in this specialty in 1996 and recertified in 2006. In 1999, he gave up general pediatric practice and became the Associate Medical Director of the Gundersen Lutheran Health Plan while maintaining his genetic practice. By combining these two areas of expertise, he developed an interest in the role of genetics in health care delivery. He has published and presented extensively on this topic. Since 2005, he has been the Director of the Intermountain Healthcare Clinical Genetics Institute in Salt Lake City, Utah. In addition to his administrative duties, Dr. Williams runs a clinic for evaluation of adults with mental retardation, birth defects, and genetic disorders. He is a Clinical Professor of Pediatrics in the Division of Medical Genetics and Adjunct Professor of Biomedical Informatics at the University of Utah. He is a director of the board of the American College of Medical Genetics, a participant in the Personalized Medicine Workgroup of the Department of Health and Human Services’ American Health Information
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Systems for Research and Evaluation for Translating Genome-Based Discoveries for Health: Workshop Summary Community Task Force, Vice Chair of the CDC’s EGAPP Stakeholder’s Group, a member of the CDC’s CETT program review board, and a member of the Secretary’s Advisory Committee for Genetics, Health and Society, having previously served on the Coverage and Reimbursement Task Force of that group. He is past chair of the Committee on the Economics of Genetic Services of the American College of Medical Genetics, as well as chair of the subcommittee on Health Care Systems of the Section on Genetics and Birth Defects of the AAP. He is Editor-in-Chief of the Manual on Reimbursement for Medical Genetic Services. He has authored more than 40 articles in the peer-review medical literature and has presented over 50 papers at national and international meetings.
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