Appendix B

Speaker Biographical Sketches

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 and founding director of the University of Washington’s Women’s Health Care Center. She was appointed chair of the department of medical history and ethics (now the department of bioethics and humanities) in October 2000. She is also an adjunct professor of medicine and epidemiology and a member of the Fred Hutchinson Cancer Research Center. She is a member of the Institute of Medicine and the Association of American Physicians and is a past president of the American Society of Human Genetics. Dr. Burke’s research addresses the social, ethical, and policy implications of genetics, including the responsible conduct of genetic and genomic research, genetic test evaluation, and the implications of genomic health care for underserved populations. She is director of the University of Washington Center for Genomics and Healthcare Equality, a National Human Genome Research Institute Center of Excellence in Ethical, Legal, and Social Implications research, and co-director of the Northwest-Alaska Pharmacogenomic Research Network.

Atul Butte, M.D., Ph.D., is chief of the division of systems medicine and associate professor of pediatrics and, by courtesy, medicine and computer



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Appendix B Speaker Biographical Sketches 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 ­ ashington. W 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 and founding director of the University of Washington’s Women’s Health Care Center. She was appointed chair of the department of medical history and ethics (now the department of bioethics and humanities) in October 2000. She is also an adjunct professor of medicine and epidemiology and a member of the Fred Hutchinson Cancer Research Center. She is a member of the Insti- tute of Medicine and the Association of American Physicians and is a past president of the American Society of Human Genetics. Dr. Burke’s research addresses the social, ethical, and policy implications of genetics, including the responsible conduct of genetic and genomic research, genetic test evalu- ation, and the implications of genomic health care for underserved popula- tions. She is director of the University of Washington Center for Genomics and Healthcare Equality, a National Human Genome Research Institute Center of Excellence in Ethical, Legal, and Social Implications research, and co-director of the Northwest-Alaska Pharmacogenomic Research Network. Atul Butte, M.D., Ph.D., is chief of the division of systems medicine and associate professor of pediatrics and, by courtesy, medicine and computer 53

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54 EFFICIENCY AND EFFECTIVENESS OF GENOMIC SCIENCE TRANSLATION science at Stanford University and the Lucile Packard Children’s Hospital. Dr. Butte trained in computer science at Brown University, worked as a soft- ware engineer at Apple and Microsoft, received an M.D. at Brown Univer- sity, trained in pediatrics and pediatric endocrinology at Children’s Hospital Boston, and then received a Ph.D. in health sciences and technology from Harvard Medical School and the Massachusetts Institute of Technology. Dr. Butte is also a founder of Personalis, which provides clinical interpre- tations of whole-genome sequences, and NuMedii, which finds new uses for drugs. The Butte laboratory builds and applies tools that convert more than 300 billion points of molecular, clinical, and epidemiological data that have been measured by researchers and clinicians over the past decade into diagnostics, therapeutics, and new insights into disease. To facilitate this method, the Butte laboratory has developed tools to automatically index and find genomic datasets based on the phenotypic and contextual details of each experiment to deconvolve multi-cellular samples, and to perform these calculations on the Internet cloud. Dr. Butte has authored more than 120 publications and delivered more than 140 invited presentations in personalized and systems medicine, biomedical informatics, and molecular diabetes, including 30 at the National Academy of Sciences, Institute of Medicine, National Institutes of Health (NIH), or NIH-related meetings. Dr. Butte’s research has been featured in the New York Times and the Inter- national Herald Tribune (2008), the Wall Street Journal (2010 to 2012), and the San Jose Mercury News (2010). Dr. Butte has received several awards, including the 2012 FierceBiotech IT “Top 10 Biotech Techies” award and the 2011 National Human Genome Research Institute Genomic Advance of the Month. Geoffrey Duyk, M.D., Ph.D., is a partner and managing director of TPG Biotechnology. Prior to joining TPG Biotechnology in 2004, Dr. Duyk served on the board of directors and was president of research and devel- opment at Exelixis, Inc., where he led a group of more than 550 people focused on the discovery and development of small-molecule therapeutics. Prior to his work at Exelixis, Inc., he was one of the founding scientific staff at Millennium Pharmaceuticals, Inc. As vice president of Genomics at ­ Millennium Pharmaceuticals, Inc., Dr. Duyk was responsible for building and leading the informatics, automation, DNA sequencing, and genotyp- ing groups as well as the mouse and human genetics group. Prior to this, Dr. Duyk was an assistant professor at Harvard Medical School in the department of genetics and assistant investigator of the Howard Hughes Medical Institute. While at Harvard Medical School, Dr. Duyk was a co– principal investigator in the National Institutes of Health (NIH)-funded Cooperative Human Linkage Center. Dr. Duyk has been and continues to be a member of numerous NIH panels and oversight committees focused

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APPENDIX B 55 on the planning and execution of the Human Genome Project and has been elected to the board of directors of the American Society of Human G ­ enetics. Dr. Duyk graduated from Wesleyan University in 1980 with a B.A. in biology and was elected to Phi Beta Kappa. He holds a Ph.D. and an M.D. from Case Western Reserve University and completed his medical and fellowship training at the University of California, San Francisco (UCSF). While at UCSF, he was a fellow of the Lucille P. Markey Foundation and was also awarded a postdoctoral fellowship from the Howard Hughes Medical Institute. Dr. Duyk currently serves on the boards of directors of Aerie Pharmaceuticals, Inc.; Alphabet Energy, Inc.; Amyris; Beta Renew- ables; DNAnexus, Inc.; Elevance Renewable Sciences, Inc.; Fourteen22, Inc.; Galleon Pharmaceuticals, Inc.; Genomatica; and Karos Pharmaceuti- cals, Inc., and is a board observer at Ultragenyx Pharmaceutical, Inc. Pat Furlong, B.S.N., is the founding president and chief executive officer of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organiza- tion in the United States solely focused on Duchenne muscular dystrophy (Duchenne). The mission of PPMD is to end Duchenne. PPMD accelerates research, raises its voice in Washington, DC, demands optimal care for all young men, and educates the global community. Duchenne is the most com- mon fatal genetic childhood disorder, which affects approximately 1 out of every 3,500 boys each year worldwide. It currently has no cure. When doctors diagnosed her two sons, Christopher and Patrick, with Duchenne in 1984, she did not accept “there’s no hope and little help” as an answer. She immersed herself in Duchenne, working to understand the pathology of the disorder, the extent of research investment, and the mechanisms for optimal care. Her sons lost their battle with Duchenne in their teenage years, but she continues to fight—in their honor and for all families affected by Duchenne. In 1994, Ms. Furlong, together with other parents of young men with Duchenne, founded PPMD to change the course of Duchenne and, ultimately, to find a cure. Today, she continues to lead the organization and is considered one of the foremost authorities on Duchenne in the world. Daniel Geschwind, M.D., Ph.D., is the Gordon and Virginia MacDonald Distinguished Chair in Human Genetics and is a professor of neurology and psychiatry at the University of California, Los Angeles (UCLA), School of Medicine. He is director of the Neurogenetics Program and the Center for Autism Research and Treatment and co-director of the Center for Neuro­ behavioral Genetics at UCLA. Dr. Geschwind obtained an A.B. in psychol- ogy and chemistry at Dartmouth College and M.D. and Ph.D. degrees at Yale School of Medicine prior to completing his internship, residency (neurology), and postdoctoral fellowship at UCLA. He joined the UCLA faculty in 1997. His laboratory works to improve understanding of human

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56 EFFICIENCY AND EFFECTIVENESS OF GENOMIC SCIENCE TRANSLATION neuropsychiatric diseases, such as autism and neurodegenerative diseases. The lab’s approach relies heavily on systems-level integration involving computational and bioinformatic methods, in addition to wet laboratory experimentation. Dr. Geschwind has also put considerable effort into fos- tering the development of large-scale collaborative patient resources for genetic research and data sharing. He is a strong advocate for sharing of data and biomaterials, having provided scientific oversight for the Autism Genetic Resource Exchange. He sits on several scientific advisory boards, including the Faculty of 1000 Medicine, the Executive Committee of the American Neurological Association, and the National Institutes of Health Council of Councils. He received the Derek Denny-Brown Neurological Scholar Award from the American Neurological Association in 2004 and the Scientific Service Award from Autism Speaks in 2007 and is a member of the Institute of Medicine. Geoffrey Ginsburg, M.D., Ph.D., is the founding director for genomic medicine at Duke University and assumed his current position in the Duke Institute for Genome Sciences & Policy in 2004. He is also the founding executive director of the Center for Personalized Medicine, established in the Duke University Health System in 2010. He is currently professor of medicine and pathology at the Duke University Medical Center. While at Duke, Dr. Ginsburg has pioneered translational genomics, initiating pro- grams in genome-enabled biomarker discovery, longitudinal registries with linked molecular and clinical data, biomarker-informed clinical trials, and the development of novel practice models and implementation research for the integration of genomic tools in heath care systems. He is an inter- nationally recognized expert in genomics and personalized medicine, with more than 200 published papers and funding from the National Institutes of Health (NIH), the U.S. Department of Defense, the Defense Advanced Research Projects Agency, the Bill & Melinda Gates Foundation, and indus- try. In 1990, he joined the faculty of Harvard Medical School, where he was director of preventive cardiology at Beth Israel Hospital, and led a labora- tory in applied genetics of cardiovascular disease at Children’s Hospital. In 1997 he joined Millennium Pharmaceuticals Inc. as senior program director for cardiovascular diseases and was eventually appointed vice president of molecular and personalized medicine, where he was responsible for devel- oping pharmacogenomic strategies for therapeutics, as well as biomarkers for disease and their implementation in the drug development process. He has received a number of awards for his research accomplishments, includ- ing the Innovator in Medicine Award from Millennium in 2004 and the Basic Research Achievement Award in Cardiovascular Medicine from Duke in 2005. He is a founding member and former board member of the Person- alized Medicine Coalition, a senior consulting editor for the Journal of the

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APPENDIX B 57 American College of Cardiology, an editor for the HUGO Journal, and an editorial advisor for Science Translational Medicine. In addition, he is the editor of Genomic and Personalized Medicine (Elsevier), whose first edition was published in 2009. He has been a member of the Secretary of Veterans Affairs Advisory Council on Genomic Medicine and the National Advisory Council for Human Genome Research at NIH. He is currently an interna- tional expert panel member for Genome Canada; a member of the Board of External Experts for the National Heart, Lung, and Blood Institute; a member of the Institute of Medicine’s Roundtable on Translating Genome- Based Research for Health; and a member of the External Scientific Panel for the Pharmacogenomics Research Network. He was recently appointed to the Advisory Council for the newly established National Center for Advancing Translational Sciences at NIH. He received an M.D. and a Ph.D. in biophysics from Boston University and completed an internal medicine residency at Beth Israel Hospital in Boston, Massachusetts. He subsequently pursued postdoctoral training in clinical cardiovascular medicine at Beth Israel Hospital and in molecular biology at Children’s Hospital as a Bugher Foundation Fellow of the American Heart Association. David G. Huntsman, M.D., F.R.C.P.C., F.C.C.M.G., is a professor in the departments of pathology and laboratory medicine and obstetrics and gynaecology at the University of British Columbia and is the Dr. Chew Wei Memorial Professor of Gynaecologic Oncology. He is a staff path- ologist at the British Columbia Cancer Agency (BCCA) and a consulting pathologist at the Vancouver General Hospital (VGH). Dr. Huntsman is currently the director of the British Columbia multidisciplinary ovarian cancer research team, medical director of the Centre for Translational and Applied Genomics at the BCCA, and co-director of the Genetic Pathology ­ Evaluation Centre at the Jack Bell Research Centre, VGH. Dr. Huntsman’s research has led to the development of predictive and prognostic tissue- based cancer biomarkers for ovarian cancer and a wide variety of other tumor types. His team created a blueprint for subtype-specific ovarian cancer control and has been a leader in the application of novel genomics ­ technologies to ovarian cancer. As collaboration is critical in his field, ­ Huntsman happily leads and engages in a wide number of multidisciplinary research groups. Most recently, he has been working on the creation of a broad-based personalized medicine initiative for British Columbia. Edison Liu, M.D., is the president and chief executive officer of The Jackson ­ Laboratory. Prior to joining the Laboratory, Dr. Liu was the founding executive director of the Genome Institute of Singapore (GIS) from 2001 to 2011. GIS grew into one of the leading genomics research institutes g ­lobally, comprising 27 laboratory groups and a staff of 270. Between

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58 EFFICIENCY AND EFFECTIVENESS OF GENOMIC SCIENCE TRANSLATION 1997 and 2001, he was the scientific director of the National Cancer Insti- tute’s Division of Clinical Sciences in Bethesda, Maryland, where he was in charge of the intramural clinical translational science programs. From 1987 to 1996, Dr. Liu was a faculty member at the University of North C ­ arolina at Chapel Hill, where he was director of the Lineberger Com- prehensive Cancer Center’s Specialized Program of Research Excellence ­ in Breast Cancer, director of the Laboratory of Molecular Epidemiology ­ at the School of Public Health, chief of medical genetics, and chair of the Correlative Science Committee of the National Cooperative Clinical Trials group Cancer and Leukemia Group B. Dr. Liu’s own scientific research has focused on the functional genomics of human cancers, particularly breast cancer, uncovering new oncogenes and deciphering the dynamics of the reg- ulation of genes that modulate cancer biology on a genomic scale. He has authored more than 300 scientific papers and reviews and has co-authored 2 books. He obtained a B.S. in chemistry and psychology, as well as an M.D., at Stanford University. He served his internship and residency at Washington University’s Barnes Hospital in St. Louis, Missouri, followed by an oncology fellowship at Stanford University. From 1982 to 1987 he was at the G.W. Hooper Foundation, University of California, San Francisco. Robert L. Nussbaum, M.D., focuses his research efforts on three main areas: (1) the genetic contribution to Parkinson’s disease; (2) the rare X-linked disease known as the oculocerebrorenal syndrome of Lowe, characterized by congenital cataracts, Fanconi syndrome of the renal proximal tubules, neurological dysfunction, and developmental delay; and (3) the value of personalized medicine through the application of genetic and genomic approaches to improving patient care. Dr. Nussbaum seeks to evaluate if and how genetic and genomic information about an individual can effectively be used to improve health care by improving outcomes, reduc- ing adverse reactions, lowering costs, and promoting health through risk education. As chief of the Division of Medical Genetics in the Department of Medicine and as a faculty member in the Institute of Human Genetics at the University of California, San Francisco, Dr. Nussbaum is seeking to develop collaborative research efforts with clinicians-researchers interested in studying how the application of genomics can improve patient care. William J. Rutter, Ph.D., is chair, chief executive officer, and founder of ­ ynergenics, LLC, which owns or controls a portfolio of biotechnology S companies at various stages of development. Dr. Rutter, with two colleagues, founded Chiron Corporation in 1981, a pioneering biotech firm that devel- oped the first recombinant vaccine (for hepatitis B); that was the first to sequence of the HIV genome in 1984; and that discovered, cloned, and sequenced the hepatitis C virus in 1987. Chiron also developed quantitative

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APPENDIX B 59 diagnostic tests for determination of viral loads, a new concept that opened the way for the development of therapeutic drugs and vaccines against these viruses. In 1995, the Swiss pharmaceutical company Ciba-Geigy acquired 49 percent of Chiron in a transformative transaction. Subsequently, Sandoz merged with Ciba-Geigy to form Novartis. Dr. Rutter joined the Novartis Board of Directors and remained with Chiron until 1998. Novartis pur- chased the remaining portion of Chiron in 2005. Dr. Rutter played a key role in developing the University of California, San Francisco (UCSF), into a major scientific institution. He joined UCSF as head of its new depart- ment of biochemistry and biophysics in 1968 and helped build the science enterprise during the period of major developments in recombinant DNA technology, based on the discoveries of colleague Herbert Boyer and Stanley Cohen of Stanford University. After the formation of Chiron, he became director of UCSF’s Hormone Research Institute, a post that he retained until 1989, when he joined Chiron full-time. He has published more than 380 scientific articles and holds more than 25 patents. Dr. Rutter is a member of the National Academy of Sciences and the American Academy of Arts and Sciences and has received numerous awards for his contributions to science and the biotechnology industry. Randy Scott, Ph.D., is chair and chief executive officer of InVitae Corpo- ration, a privately owned company focused on bringing comprehensive genetic information into routine medical practice for millions of people. Prior to joining InVitae, Dr. Scott founded Genomic Health in 2000 and led the company as CEO for 9 years with a focus on improving the quality of treatment decisions for patients with cancer. In addition, Dr. Scott was a cofounder and chief scientific officer for Incyte from 1991 to 2000. An author of more than 40 scientific publications, the holder of 20 patents, and the recipient of numerous awards, Dr. Scott holds a B.S. degree in chemistry from Emporia State University and a Ph.D. in biochemistry from the University of Kansas. Todd Sherer, Ph.D., is the chief executive officer of The Michael J. Fox Foundation for Parkinson’s Research (MJFF), reporting to the board of directors. Formally trained as a neuroscientist, he directs the organiza- tion’s research strategy and is responsible for the organization’s overall scientific and fundraising direction to speed treatment breakthroughs and a cure for Parkinson’s disease. Dr. Sherer has been a key architect of the foundation’s strategy to define high-priority research areas for Parkinson’s disease—therapeutic targets and approaches that are the closest or the most critical to practical relevance in patients’ daily lives—to leverage donor-raised capital to push projects in these areas toward the clinic. He has played a major role in the foundation’s efforts to increase the phar-

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60 EFFICIENCY AND EFFECTIVENESS OF GENOMIC SCIENCE TRANSLATION maceutical industry’s investment in Parkinson’s disease drug development and engage the patient community to encourage and expand participation in clinical research. Today he is one of the world’s foremost experts on the science and business of Parkinson’s disease drug development, speaking frequently on these topics at conferences, to the media, and to members of the Parkinson’s disease community. Dr. Sherer’s work with the founda- tion began in 2003, when, as a postdoctoral fellow at Emory University in Atlanta, Georgia, he was awarded MJFF funding to investigate the role of environmental factors in Parkinson’s disease. He joined the foundation’s staff full-time as associate director of research programs in April 2004. He was promoted to vice president of research programs in June 2006 and chief program officer in November 2010, finally assuming the role of chief executive officer in May 2011. Dr. Sherer is a member of the board of direc- tors of the Parkinson’s Action Network and participates in the Institute of Medicine of the National Academies Forum on Neuroscience and Nervous System Disorders. He is a collaborating scientist for the Coalition Against Major Diseases and a member of the CINAPS Advisory Committee at the National Institute of Neurological Disorders and Stroke, National Institutes of Health. In addition, Dr. Sherer was selected to join the National Center for Advancing Translational Sciences Council and the Cures Acceleration Network Review Board at the National Institutes of Health. During his career as a bench researcher, Dr. Sherer published more than 30 peer- reviewed articles in scientific journals. He earned a Ph.D. in neuroscience from the University of Virginia and holds a B.S. in psychology from Duke University in Durham, North Carolina. Sharon Terry, M.A., is president and chief executive officer of the Genetic Alliance, a network of more than 10,000 organizations, 1,200 of which are disease advocacy organizations. Genetic Alliance improves health through the authentic engagement of communities and individuals. It develops inno- vative solutions through novel partnerships, connecting consumers to smart services. She is the founding CEO of PXE International, a research advo- cacy organization for the genetic condition pseudoxanthoma ­lasticum e (PXE). As codiscoverer of the gene associated with PXE, she holds the patent for ABCC6 and has assigned her rights to the foundation. She developed a diagnostic test and is conducting clinical trials. Ms. Terry is also a cofounder of the Genetic Alliance Registry and Biobank. She is the author of more than 90 peer-reviewed articles. In her focus at the fore- front of consumer participation in genetics research, services, and policy, she serves in a leadership role on many major international and national organizations, including the Institute of Medicine (IOM) Board on Health Sciences Policy, the National Coalition for Health Professional Education in Genetics Board, and the International Rare Disease Research Consortium

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APPENDIX B 61 Interim Executive Committee, and is a member of the IOM Roundtable on Translating Genomic-Based Research for Health. She is on the edito- rial boards of several journals. She was instrumental in the passage of the Genetic Information Nondiscrimination Act. In 2005, she received an honorary doctorate from Iona College for her work in community engage- ment, the first Patient Service Award from the University of North Carolina Institute for Pharmacogenomics and Individualized Therapy in 2007, the Research!America Distinguished Organization Advocacy Award in 2009, and the Clinical Research Forum and Foundation’s Annual Award for Leader­ hip in Public Advocacy in 2011. She is an Ashoka Fellow. s

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