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The Value of Genetic and Genomic Technologies: Workshop Summary Appendix B Speaker Biographical Sketches Bruce D. Blumberg, M.D., is director of graduate medical education (the resident physician training programs) for Northern California Kaiser Permanente and has been the Co-Chief of Genetics at the Oakland KP Medical Center, since joining Kaiser Permanente in 1981. He currently maintains small clinical practices at both his Oakland and San Francisco facilities. He believes in a team-based approach to medical care with patients and their families as key members of the team. Since he practices at multiple sites, genetic counselors are a crucial and consistent communication link between him and his patients. Also, he is a clinical professor of pediatrics at the University of California at San Francisco and an adjunct clinical professor of pediatrics at Stanford University School of Medicine. His clinical interests within genetics are broad, and he has a subspecialty interest in inherited disorders of skeletal and connective tissue development. His research interests are in the area of the psychosocial and emotional aspects of prenatal diagnosis. Dr. Blumberg holds a medical degree from Yale University School of Medicine, has completed his residency in pediatrics at Stanford University Hospital and UCLA Center for the Health Sciences, and finished a specialty fellowship in medical genetics at Harbor-UCLA Medical Center. He also received a B.A. from Dartmouth College. Mark S. Boguski, M.D., Ph.D., is on the faculty of Harvard Medical School at the Center for Biomedical Informatics and the Department of Pathology at Beth Israel Deaconess Medical Center in Boston. He has previously held positions at the Johns Hopkins University School of Medicine, the U.S. National Institutes of Health, and the U.S. National Library of Medicine
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The Value of Genetic and Genomic Technologies: Workshop Summary and has served as an executive in the biotechnology and pharmaceutical industries. Dr. Boguski is a former vice president of Novartis and was honored as a visionary and influencer by the Personalized Medicine Coalition in 2006. He was elected to the Institute of Medicine of the U.S. National Academy of Sciences and the American College of Medical Informatics in 2001. Dr. Boguski is a graduate of the Medical Scientist Training Program at Washington University in St. Louis. His research background and interests are detailed at http://www.markboguski.net/themes.htm. Wylie Burke, M.D., Ph.D., is professor and chair of the Department of Bioethics and Humanities at the University of Washington. 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. Dr. Burke was a member of the Department of Medicine at the University of Washington 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 University of Washington’s Women’s Health Care Center from 1994 to 1999. She was appointed chair of the Department of Medical History in October 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 in 1998 and is a Fellow of the American College of Physicians. She has served on the 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. Roy Gandolfi, M.D., is an associate medical director at SelectHealth Insurance. SelectHealth is the insurance arm of Intermountain Health Care, a nonprofit company providing care to the intermountain West. His responsibilities include evaluating quality initiatives; adopting utilization guidelines, including genetic testing coverage; and pharmaceutical management. He participates in Intermountain’s Clinical Genetics Institute. He is a practicing general internist and is an associate adjunct professor of medicine at the University of Utah. His undergraduate and medical degrees were obtained from the University of Michigan. Residency training was accomplished at the University of Utah.
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The Value of Genetic and Genomic Technologies: Workshop Summary Anna D. Garrett, Pharm.D., BCPS, is manager of outpatient clinical pharmacy programs for Mission Hospitals. Dr. Garrett received her bachelor and doctorate degrees in pharmacy from the University of North Carolina at Chapel Hill. She also holds a bachelor’s degree in business administration with an accounting concentration from the University of North Carolina at Chapel Hill. Dr. Garrett completed a residency in hospital pharmacy practice at Wake Forest University Baptist Medical Center in 1991. She has practiced in the areas of infectious diseases and ambulatory care in both the hospital and physician office settings. Before coming to Mission she was the director of clinical pharmacy at Cornerstone Health Care in High Point, N.C. In her current position, she is responsible for managing existing pharmacist-run clinics and the expansion of pharmacist services in the outpatient environment. Dr. Garrett is also coordinating the activities of providers in the Asheville Project®, a nationally recognized program of patient self-management for chronic diseases. Dr. Garrett is also president and founder of the National Association of Women in Health Care, an organization that is dedicated to promoting the importance of self-care for women working in health care. Karen Kaplan covers science for the Los Angeles Times. Since joining the desk in 2005, she has focused on genetics, stem cells, cloning, and the science of food and agriculture. Her coverage of genetics includes stories on the unreliability of DNA testing kits marketed directly to consumers over the Internet, the U.S. military’s record of discriminating against service members with genetic disorders, the pros and cons of relying on DNA to decide who is a Native American, and the controversial theory that the reason debilitating genetic diseases persist among Ashkenazi Jews is that the mutations that cause them also boost intelligence. Before joining the science desk, Kaplan spent 10 years covering technology in the paper’s business section as a reporter and editor. She studied economics and political science at MIT (where some of her friends decoded DNA by hand for the Human Genome Project in the early 1990s) and earned her master’s degree in journalism from Columbia University in 1994. Arthur N. Lurvey, M.D., F.A.C.P., FACE, is a board certified internist and endocrinologist and has been a Medicare contractor medical director for 14 years, initially working for the California Part B Carriers Transamerica Occidental Life Insurance Company, National Heritage Insurance Company, and National Government Services and, most recently, for Palmetto GBA, the Medicare contractor in jurisdiction J-1. He was in clinical practice for 35 years. Dr. Lurvey received his M.D. degree from the University of Illinois and had his postdoctoral and fellowship training at Los Angeles County-USC Medical Center. He is a delegate to both the California Medical Association
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The Value of Genetic and Genomic Technologies: Workshop Summary and the American Medical Association, has been a past hospital chief of staff, and serves on the quality and the CHART committees of the Hospital Council of Southern California. He also is on the board of the California Region of the American College of Physicians and on several committees of the American Association of Clinical Endocrinologists. Dr. Lurvey is a member of the American College of Physician Executives. Other medical activities include service as a CMA surveyor for both the Joint Commission hospital survey program and the continuing medical education accreditation program in California. Donald O. Lyman, M.D., DTPH, currently serves as chief of the Division of Chronic Disease and Injury Control in the California Department of Health Services (CDHS). This division addresses prevention of the leading causes of death, illness, disability, and medical care costs. It houses the state’s premier tobacco control program (realized a 40 percent reduction in smoking rates, a 65 percent reduction in tobacco consumption and a 26 percent decrease in tobacco-related cancer rates); a statewide cancer registry; control programs directed to cardiovascular diseases and diabetes; and a host of other categorical prevention programs. It is now working on public health’s interface with the medical care industry to realize the potential benefits of prevention in the managed care setting. Dr. Lyman received his B.A. in chemistry from the University of Pennsylvania, his M.D. from Yale University, and his DTPH from the London School of Hygiene and Tropical Medicine. He did his residency training at the University of Miami (Florida) and UCSD. He has worked at the Centers for Disease Control and Prevention in various state, national, and international capacities. He has been the disease control officer (State Epidemiologist) for both New York and California and has been with the CDHS since 1978. Elizabeth Mansfield, Ph.D., is the director of the personalized medicine staff in the Office of In Vitro Diagnostic Devices in the Center for Devices, FDA, where she is developing a program to address companion and novel diagnostic devices. She was previously a senior policy analyst in the Office of In Vitro Diagnostic Devices, managing policy and scientific issues. Dr. Mansfield formerly served as the director of regulatory affairs at Affymetrix, Inc. from 2004 to 2006. She has also served in other positions at FDA, including scientific reviewer and genetics expert. Dr. Mansfield received her Ph.D. from Johns Hopkins University and completed postdoctoral training at the National Cancer Institute (NCI) and the National Institute for Arthritis, Musculoskeletal, and Skin Diseases (NIAMS). Dennis Salisbury, M.D., FAAFP, is an alumnus of Whitworth College and of the University of Washington School of Medicine, class of 1989. He finished
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The Value of Genetic and Genomic Technologies: Workshop Summary his transitional internship at Deaconness Medical Center (Spokane, Washington) in 1990, his residency in family medicine at Phoenix Baptist Medical Center (Phoenix, Arizona) in 1993 and a fellowship in interventional and high risk obstetrics at Family Medicine Spokane in 1994. Since then he has practiced full-time at the Rocky Mountain Clinic in Butte, Montana, a private multispecialty group. He is also an associate professor of healthcare informatics at Montana Tech University and the physician liaison for careQuest, an inpatient electronic medical record, at St. James Healthcare in Butte. He is secretary-treasurer of the Montana Academy of Family Physicians and a former president of that organization. He has served on the Commission for Continuing Professional Development of the American Academy of Family Physicians (AAFP) and was chair of its Subcommittee for Assembly Scientific Program; he has been an alternate delegate to the AAFP’s Congress of Delegates twice. He serves on the EGAPP Stakeholders’ Group and spoke at the inaugural GAPPNet meeting in Ann Arbor last October. As a product of his marriage, he has done personal practicum work in genetics three times, one of which involved the splitting of a zygote into two. (That is, he has three children, two of whom are identical twins.) He has speculated that the zygote splitting was caused by riding on a high-speed roller coaster, but he is reluctant to engage in further experiments to verify this hypothesis. His partner in this practicum would like it to be pointed out she did more of the work than he did. Other research includes participating in the Translating Research in Post-Partum Depression study through the AAFP Research Network. Andrew Spiegel, J.D., B.S., B.A., is chief executive officer of the Colon Cancer Alliance. Mr. Spiegel, an attorney, was previously a founder and board member of the alliance. His goals are to bring national attention to this disease by promoting screening compliance, soliciting funds dedicated to this cancer, and helping to diminish the alarming number of unnecessary deaths from this very preventable disease. Spiegel has a long and personal history with colorectal cancer. In 1998, Spiegel’s mother was diagnosed with metastatic colon cancer and died nine months later. It was then that Spiegel and a group of others founded the CCA to help bring greater public awareness to the disease and to provide support for those already affected. Since then, the CCA has grown tremendously and remains the leading advocacy group to battle colorectal cancer. Spiegel is a 1986 graduate of Temple University in Philadelphia, where he earned a Bachelor’s degree in political science with minors in English and philosophy. He is a 1989 graduate of the Widener University School of Law where he was an editor of the Delaware Law Forum, an invited member of the Phi Delta Phi legal honors society, and a member of the Moot Court Honor Society. After working for a Philadelphia litigation firm, Spiegel opened his own law firm
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The Value of Genetic and Genomic Technologies: Workshop Summary in 1995 and is a participating member of numerous legal organizations in the region. Vance Vanier, M.D., is the CEO and president of Navigenics. Dr. Vanier has spent the last decade of his career dedicated to prevention and personalized medicine. After working as an emergency physician on the front lines of medicine and seeing the overwhelming need for new preventive technologies, Dr. Vanier became a partner in the life sciences practice at Mohr Davidow Ventures (MDV). At MDV, Dr. Vanier invested in and helped build groundbreaking companies in the molecular and electrical diagnostic space, including iRhythm, CardioDx, and Crescendo Biosciences. Recognizing the early promise of preventive genomics, he joined Navigenics in 2008 as the company’s chief medical officer. He created a vision for Navigenics built around a powerful idea—that the most effective and responsible way to introduce preventive genomic testing to the public was with the support and partnership of corporate medical directors, medical centers, and physician offices, in addition to Navigenics’ own team of genetic counselors. Within 2 years, he built a series of clinical collaborations and distribution relationships that have made Navigenics the No. 1 physician-endorsed company in the preventive genomics space. These achievements include launching the Scripps Genomic Health Initiative, the largest behavioral genomics initiative in history; partnering with premier national physician groups such as MDVIP with its 100,000 covered lives; and building a network of large self-insured marquee employers who are incorporating Navigenics into their wellness and benefit programs. In further developing these and future partnerships, Dr. Vanier is committed to the belief that the transformative value of preventive genomics lies in its ability to motivate behavior change and medical compliance. Dr. Vanier continues to serve on the clinical faculty of Stanford Medical Center. Dr. Vanier received his medical degree from the Johns Hopkins School of Medicine and completed his residency training at the University of California, San Francisco, and Highland Hospital in Oakland, California. He received an M.B.A. from Stanford University as well as dual bachelor’s degrees with honors. David Veenstra, Pharm.D., Ph.D., is an associate professor in the Pharmaceutical Outcomes Research and Policy Program in the Department of Pharmacy, and a member of the Institute for Public Health Genetics at the University of Washington. Dr. Veenstra’s methodological expertise is in cost-effectiveness modeling, including decision analysis, Markov modeling, and Monte Carlo simulation. Dr. Veenstra also has significant experience in developing disease simulation and cost-effectiveness models for chronic diseases, particularly hepatitis B. As part of an ongoing series of Academy of Managed Care Pharmacy educational programs, Dr. Veenstra has worked
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The Value of Genetic and Genomic Technologies: Workshop Summary extensively with formulary managers to assist them in evaluating cost-effectiveness models submitted to health care plans by manufacturers. He graduated from the University of California, San Francisco, with doctoral degrees in clinical pharmacy and computational chemistry. He conducted his postdoctoral training in outcomes research with the University of Washington, including a 1-year externship with Roche Global Pharmacoeconomics. Dr. Veenstra’s primary research interests are the clinical, economic, and policy implications of pharmacogenomic-based drug therapies. His major research projects include association studies of genetic variants with the outcomes of warfarin treatment and cost-effectiveness studies of genetic tests for warfarin, breast cancer, and lung cancer therapies. Dr. Veenstra’s other major research interest is the development of disease simulation models for chronic diseases, particularly hepatitis B. He has worked extensively with the Academy of Managed Care Pharmacy to develop guidelines and train decision makers in the practical application of cost-effectiveness models. Dr. Veenstra is an author on over 60 scientific articles, including publications in the journals JAMA, the New England Journal of Medicine, and Science. Dr. Veenstra is a member of the International Society for Pharmacoeconomics and Outcomes Research and of the International Health Economics Association. Dr. Veenstra is a past recipient of the PhRMA Foundation Career Development Award in Pharmacoeconomics. Catherine A. Wicklund, M.S., CGC, is the director of the graduate program in genetic counseling at Northwestern University and an assistant professor in the Department of Obstetrics and Gynecology. She received her masters in genetic counseling from the University of Texas-Graduate School of Biomedical Sciences. She has 15 years experience in clinical genetic counseling and has provided prenatal and pediatric genetic services. Before she joined Northwestern, she co-directed the graduate program in genetic counseling at the University of Texas. While at the University of Texas she was also the director of genetic counseling services in the Department of Obstetrics, Gynecology, and Reproductive Medicine. She served on the board of directors of the National Society of Genetic Counselors, first as Region V representative, then as secretary, and was president in 2008. As a leader in NSGC she has represented the organization on several national committees, including the Secretary’s Advisory Committee on Genetics, Health, and Society. She is also active on a state level and is working with the Illinois Department of Public Health on genetics education and finance and reimbursement issues, and she is on the Genetic and Metabolic Diseases Advisory Committee. Janet Williams, M.A., CGC, is the coordinating genetic counselor for the Intermountain Healthcare Clinical Genetics Institute in Salt Lake City, Utah.
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The Value of Genetic and Genomic Technologies: Workshop Summary In addition to providing patient counseling, she has worked in program development in many clinical settings. Currently, she is actively involved in cancer genetics program development, the integration of family history information into the medical record, and development of reimbursement strategies for genetic counselors. Marc S. Williams, M.D., FAAP, FACMG, is an alumnus of the University of Wisconsin-Madison, having 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 from 1981–1984. After 2 years of solo practice in Hillsdale, Michigan, he joined the Riverside (California) 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, Wis. 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. It was by combining these two areas of expertise that he developed an interest in the role of genetics in health care delivery. He has published and presented extensively on this topic. Since January 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 and in 2009 was elected vice president of clinical genetics. He has been a participant in the Personalized Medicine Workgroup of the Department of Health and Human Services’ American Health Information Community Task Force, vice chair of the EGAPP Stakeholder’s Group at the Centers for Disease Control and Prevention, 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 American Academy of Pediatrics. He chairs the American College of Medical Genetics Quality Improvement Special Interest Group. He is the 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 more than 50 papers at national and international meetings.
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The Value of Genetic and Genomic Technologies: Workshop Summary David R. Witt, M.D., is a medical geneticist at Kaiser Permanente in San Jose, California. His clinical practice includes a broad spectrum of general medical genetics, including dysmorphology, teratology, prenatal diagnosis, and inherited diseases of children and adults. He is the director of the Kaiser Permanente Regional Huntington Disease Predictive Testing Program. He is widely recognized for his work on population screening for cystic fibrosis and is the director of the Kaiser Permanente Prenatal Ethnicity-Based Screening Program. He has lectured on the role of medical genetics services in managed care and is the author of numerous research publications. Dr. Witt is board certified in medical genetics and pediatrics. He is a Fellow of the American College of Medical Genetics. He received his undergraduate degree from Brandeis University and his medical degree from Tufts University. His pediatric training was at the Massachusetts General Hospital, and his medical genetics fellowship was at the University of British Columbia. Steven H. Woolf, M.D., M.P.H., is a professor in the departments of family medicine, epidemiology, and community health at Virginia Commonwealth University. He received his M.D. in 1984 from Emory University and underwent residency training in family medicine at Virginia Commonwealth University. Dr. Woolf is also a clinical epidemiologist and underwent training in preventive medicine and public health at Johns Hopkins University, where he received his M.P.H. in 1987. He is board certified in family medicine and in preventive medicine and public health. Dr. Woolf has published more than 100 articles in a career that has focused on evidence-based medicine and the development of evidence-based clinical practice guidelines, with a special focus on preventive medicine, cancer screening, quality improvement, and social justice. From 1987 to 2002 he served as science advisor to, and then member of, the U.S. Preventive Services Task Force. Dr. Woolf edited the first two editions of the Guide to Clinical Preventive Services and is author of Health Promotion and Disease Prevention in Clinical Practice. He is associate editor of the American Journal of Preventive Medicine and served as North American editor of the British Medical Journal. He has consulted widely on various matters of health policy with government agencies and professional organizations in the United States and Europe, and in 2001 he was elected to the Institute of Medicine.
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