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Institute of Medicine (US) Roundtable on Translating Genomic-Based Research for Health. Innovations in Service Delivery in the Age of Genomics: Workshop Summary. Washington (DC): National Academies Press (US); 2009.

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Innovations in Service Delivery in the Age of Genomics: Workshop Summary.

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Wylie Burke, M.D., Ph.D., is professor and chair of the Department of Medical History and Ethics 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 (ELSI) research funded by the National Human Genome Research Institute (NHGRI).

Frederick M. Chen, M.D., M.P.H., acting assistant professor of family medicine, is an investigator in the WWAMI Rural Health Research Center in the Department of Family Medicine at the University of Washington and associate medical director of the Washington State Uniform Medical Plan, an employer-sponsored health insurance plan for state of Washington employees. He currently chairs the American Academy of Family Physicians’ subcommittee on genomics. His research has focused on medical education, rural health, and health policy. Before returning to the University of Washington, he was the Kerr White Visiting Scholar at the Agency for Healthcare Research and Quality and an Atlantic Fellow in Public Policy at University College London.

Catherine DesRoches, Dr.PH., is an assistant in health policy at the Institute for Health Policy at Massachusetts General Hospital and an instructor in the Department of Medicine (Health Policy) at Harvard Medical School. She currently directs several large national survey projects examining the adoption of key health information technologies by providers and hospitals. She has played a key role in both national and international surveys of physicians and the general public. Her research interests include measurement and survey research, the adoption and effective use of health information technology, public knowledge of disparities in health care and health outcomes, health workforce issues, and physician professionalism.

Sharon Kardia, Ph.D., is an associate professor of epidemiology at the University of Michigan. She is director of the Public Health Genetics Program, codirector of the Michigan Center for Genomics and Public Health, and codirector of the Life Sciences & Society Program housed in the University of Michigan School of Public Health. Dr. Kardia received her doctoral degree 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. Her main research interests are in the genomic epidemiology of cardiovascular disease and its risk factors. She is particularly interested in gene–environment, gene–gene interactions and in modeling complex relationships among 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 Michigan Center activity, Dr. Kardia is also actively working on moving genetics into chronic disease programs in state departments of health. She has been a member of three National Academy of Sciences 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).

Bruce R. Korf, M.D., Ph.D., received his M.D. from Cornell University Medical College and his Ph.D. in genetics and cell biology from Rockefeller University. He then completed training in pediatrics, pediatric neurology, and genetics at Children’s Hospital, Boston. He served as clinical director in the Division of Genetics at Children’s Hospital from 1986 to 1999 and as the medical director of the Harvard-Partners Center for Genetics and Genomics from 1999 to 2002. Currently he is the Wayne H. and Sara Crews Finley Professor of Genetics and chairman, Department of Genetics at University of Alabama, Birmingham. In his previous appointment at Harvard Medical School, he served as codirector of the course Genetics, Developmental and Reproductive Biology, taught to all first-year students at Harvard Medical School. His book based on this course, Human Genetics: A Problem-Based Approach, published by Blackwell Science, is currently in its third edition. He is also coauthor of Medical Genetics at a Glance, coeditor of the fifth edition of Emery and Rimoin’s Principles and Practice of Medical Genetics, and coeditor of Current Protocols in Human Genetics. Dr. Korf is president-elect of the American College of Medical Genetics. He has completed terms as president of the Association of Professors of Human and Medical Genetics, member of the boards of directors of the American College of Medical Genetics and the American Society of Human Genetics, and member of the Liaison Committee on Medical Education. He currently serves on the National Cancer Institute Board of Scientific Counselors.

Elissa Levin, M.S., C.G.C., is a board-certified genetic counselor whose experience ranges from the research lab to medical centers to the Inter-net. Levin is currently the director of genetic counseling at Navigenics, where she developed the first comprehensive genetic counseling program to support genomic risk assessment for common health conditions. Prior to Navigenics, Levin was the director of clinical services at DNA Direct, where she helped pioneer one of the first direct-to-consumer genetic testing programs, providing testing, education, and counseling services for specific medical conditions. Levin began her career focused on the genetics of congenital heart disease, providing genetic counseling and education to families and staff in the cardiology division of the Children’s Hospital of Philadelphia. At the University of California, San Francisco, Medical Center, she provided clinical services for clients of all ages about general and metabolic genetics and coordinated clinical trials for enzyme replacement therapy. Her efforts to increase awareness and access to genetic services and her dedication to setting high standards for providing reliable, professional services through the Internet have led to nationwide lectures, workshops, and training sessions for a variety of audiences, from consumers to health care providers.

Debra Lochner Doyle, M.S., C.G.C., is the designated state genetics coordinator for the Washington State Department of Health. She has a B.S. in genetics from the University of Washington and an M.S. in human genetics and genetic counseling from Sarah Lawrence College. She is board certified by the American Board of Medical Genetics and the American Board of Genetic Counseling. Before joining the Department of Health, she served as a cytogenetic technologist with Memorial Sloan-Kettering Cancer Research Center and as the senior genetic counselor for the Jones Institute for Reproductive Medicine, the Children’s Hospital of the King’s Daughters in Vir-ginia, and Women and Infants Hospital in Rhode Island. She is a national leader, serving as a member of the Health Care Professional Advisory Committee and Current Procedural Terminology adviser for the American Medical Association, a founding member of the Economics of Genetic Services Committee of the American College of Medical Genetics, past president of the National Society of Genetic Counselors, and a founding member and past president of the Coalition of State Genetic Coordinators.

Vivian Ota Wang, Ph.D., C.G.C., F.A.C.M.G., is a National Institutes of Health (NIH) agency representative of the National Science and Technology Council of the Executive Office of the President to the National Nanotech-nology Coordination Office and program director of the Ethical, Legal, and Social Implications Research Program of NHGRI. Previously she was a senior adviser to the director of the Office of Behavioral and Social Sciences Research at NIH. Prior to joining NIH, she held tenure-track faculty positions at Rutgers, Arizona State, and Vanderbilt universities, where her research program focused on information processing related to race and racial identity in genetics, education, and community outreach. She received the National Society of Genetic Counselors Special Projects Award to develop a multicultural genetic counseling curriculum. She is currently working on policy and risk communication issues related to the scientific, ethical, legal, and social implications of nanoscience and nanotechnol-ogy. Dr. Ota Wang’s accomplishments have been recognized by numerous awards and honors. To name a few, she has been awarded a U.S. Department of Health and Human Services Secretary’s Award for Distinguished Service, the Colorado College’s Louis T. Benezet Award, and the Asian American Psychological Association’s Distinguished Contributions Award. Dr. Ota Wang received a B.A. in biology from Colorado College, an M.S. in genetic counseling from the University of Colorado, and an M.Phil. and Ph.D. in counseling psychology from Columbia University. She is a fellow of the American College of Medical Genetics, a diplomate of the American Board of Genetic Counseling, a clinical laboratory specialist in cytogenetics, and a licensed psychologist.

Cynthia A. Prows, R.N., is a clinical nurse specialist in genetics at the Cincinnati Children’s Hospital Medical Center (CCHMC). Ms. Prows directs the Genetics Education Program for Nurses (GEPN). This program started as the Genetics Program for Nursing Faculty in 1996 with funding from NHGRI’s ELSI extramural research program. In 2003, web-based genetics education offerings were developed to meet the needs of the broader nursing community. Again, these were possible with funding from NHGRI’s ELSI program as well as Health Resources and Services Administration’s Division of Nursing. Various GEPN web-based offerings have been sustained through registration fees and have provided genetics education to more than 1,000 nurses. Ms. Prows has been a core member of the CCHMC Genetic Pharmacology Service since its inception and has published articles about pharmacogenetics in the nursing literature. Ms. Prows is a past president and an active member of the International Society of Nurses in Genetics, a fellow of the American Academy of Nursing, and a cochair of the Content and Instruction Work Group of the National Coalition for Health Professionals Education in Genetics. She has served on NIH scientific review panels and HRSA’s National Advisory Council on Nurse Education and Practice.

Heather L. Shappell, M.S., C.G.C., is a board-certified genetic counselor who completed her graduate training at the University of Pittsburgh and has focused on hereditary cancer genetics throughout her professional career. She is a member of the Scientific Advisory Board of the hereditary cancer patient advocacy organization FORCE (Facing Our Risk of Cancer Empowered). In addition to her face-to-face clinical work at several National Cancer Institute–designated comprehensive cancer centers, Ms. Shappell was employed by Myriad Genetic Laboratories, Inc., where she provided hereditary cancer consultation and education to patients, physicians, and Myriad employees about hereditary cancer and genetic testing by telephone. Through her extensive contact with patients and health care providers throughout the United States, she recognized that limited access to genetic counseling expertise was compromising patient care. Her concern about patient access to quality care combined with her expertise in conveying detailed and life-saving information by telephone led her to create the first national company to address the problem of limited access to genetic counseling experts. As founder of Informed Medical Decisions, Ms. Shappell’s combined experience in the field of hereditary disease, genetic testing, and telephone genetic counseling has enabled her to create new avenues of access to genetic counselors, empowering patients and their doctors to make the most informed decisions regarding genetic testing, disease screening, and prevention.

Alexandra E. Shields, Ph.D., is director of the newly formed Harvard/Massachusetts General Hospital (MGH) Center on Genomics, Vulnerable Populations & Health Disparities. She holds faculty appointments in medicine (health policy) at Harvard Medical School and MGH. Prior to joining the Harvard faculty, Dr. Shields was associate research professor in public policy at Georgetown University. She received her Ph.D. in social policy from the Heller School, Brandeis University, where she was a Pew Health Policy Scholar and an Agency for Health Care Policy and Research fellow. While at Brandeis, she also served as staff researcher for the Council on the Economic Impact of Health System Change. Prior to her doctoral work, Dr. Shields held several senior positions in state government, including director of the Bureau of Ambulatory Care for the Massachusetts Rate Setting Commission (now the Division for Health Care Finance and Policy), where she set reimbursement policy for all publicly purchased ambulatory services in the state. She also holds a B.A., summa cum laude, Phi Beta Kappa, in sociology and theology, and a master’s degree, with distinction, in systematic theology from Boston College, where she was the Bernard J. Lonergan Scholar in Theology.

Sharon Terry is president and CEO of Genetic Alliance, a coalition of more than 600 disease-specific advocacy organizations working to increase capacity in advocacy 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 of the major governmental advisory committees on medical research, including the Food and Drug Administration’s 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, health care providers, and industry working to enact effective federal policy to prohibit genetic information discrimination. She is also chair of the Social Issues Committee of the 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 coinventors of the gene associated with PXE (ABCC6), she holds the patent for the invention. She codirects a 19-lab research consortium and manages 52 offices worldwide for PXE International.

Catherine A. Wicklund, M.S., C.G.C., 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 master’s 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 joining Northwestern, she codirected the Graduate Program in Genetic Counseling at the University of Texas. While she was at the University of Texas, she was also the director of Genetic Counseling Services in the Department of Obstetrics, Gynecology, and Reproductive Medicine. She serves on the board of directors of the National Society of Genetic Counselors (NSGC) and is currently the immediate past president. 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, and she is a member of the Institute of Medicine Roundtable on Translating Genomic-Based Research for Health. 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 is on the Genetic and Metabolic Diseases Advisory Committee.

Copyright © 2009, National Academy of Sciences.
Bookshelf ID: NBK26400

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