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Speaker Biographical Sketches

Christopher Beecher, Ph.D., is research professor at the Michigan Center for Translational Pathology, University of Michigan. The research focus of the Beecher laboratory is centered on the continued development of the science of metabolomics. In this newest of the “omics” sciences, establishing methods for higher sensitivity, resolution, and reproducibility and algorithms for data handling and data generation are areas of ongoing exploration. The lab actively collaborates with a variety of researchers to find novel experimental systems that may benefit from a metabolomic analytical approach and will provide new avenues for metabolomic exploration. The Beecher recipe for a metabolomic platform is (1) a mass spectrometer-based analytical that is (2) well integrated into a (3) fully automated sample preparation operation. A full integration requires a sample flow through the platform that is fully directed by a custom-built laboratory information system (LIMS) and a second fully automated informatics system for processing information generated within the platform. Because of the high level of integration and automation, one can put in place a relentless program for error reduction and improvement. Dr. Beecher holds a B.A. in anthropology (New York University), M.S. in biology (New York University), and Ph.D. in pharmaceutical sciences–natural products chemistry (University of Connecticut). He began his research into the high-throughput chemical characterization of complex mixtures while on the faculty of the University of Illinois, College of Pharmacy (1985), where he held the position of associate professor. He was the editor of the NAPRALERT database from 1990 to 1998 and editor-in-chief of the International Journal of Pharmacognosy, and he served as a founding member of the Functional Foods Program of



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B Speaker Biographical Sketches Christopher beecher, Ph.D., is research professor at the Michigan Center for Translational Pathology, University of Michigan. The research focus of the Beecher laboratory is centered on the continued development of the sci- ence of metabolomics. In this newest of the “omics” sciences, establishing methods for higher sensitivity, resolution, and reproducibility and algo- rithms for data handling and data generation are areas of ongoing explo- ration. The lab actively collaborates with a variety of researchers to find novel experimental systems that may benefit from a metabolomic analytical approach and will provide new avenues for metabolomic exploration. The Beecher recipe for a metabolomic platform is (1) a mass spectrometer-based analytical that is (2) well integrated into a (3) fully automated sample preparation operation. A full integration requires a sample flow through the platform that is fully directed by a custom-built laboratory information system (LIMS) and a second fully automated informatics system for proc- essing information generated within the platform. Because of the high level of integration and automation, one can put in place a relentless program for error reduction and improvement. Dr. Beecher holds a B.A. in anthropol- ogy (New York University), M.S. in biology (New York University), and Ph.D. in pharmaceutical sciences–natural products chemistry (University of Connecticut). He began his research into the high-throughput chemical characterization of complex mixtures while on the faculty of the University of Illinois, College of Pharmacy (1985), where he held the position of asso- ciate professor. He was the editor of the NAPRALERT database from 1990 to 1998 and editor-in-chief of the International Journal of Pharmacognosy, and he served as a founding member of the Functional Foods Program of 63

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64 ESTABLISHING PRECOMPETITIVE COLLABORATIONS the University of Illinois. In 1997 he was invited to continue this research in the laboratories of Bristol-Myers Squibb and Ancile Pharmaceuticals. His focus shifted from secondary metabolism to primary metabolism with the establishment of the first metabolomics platform in America at Paradigm Genetics from 2000 to 2002, and in 2003, he founded two metabolomics- based companies: Metabolon, Inc. (a company that has focused plat- form technologies on human health care) and Metabolic Analyses, Inc. (a company that has focused on the informatics issues associated with metabolomics). Dr. Beecher compiled the first human metabolome in 2002 at Metabolic Analyses and has been working toward the integration of metabolomic, proteomic, transcriptomic, and genomic data. In addition to his primary appointment at the University of Michigan, Dr. Beecher serves as an adjunct professor at George Mason University and is an affiliate of the National Institute of Statistical Sciences. He holds many patents and publications in the areas of metabolomics and natural products chemistry. Ellen Wright Clayton, M.D., J.D., received a bachelor’s degree from Duke, a master’s degree from Stanford, her law degree from Yale, and her medi- cal degree from Harvard. A member of the Vanderbilt faculty since 1988, she is currently the Rosalind E. Franklin Professor of Genetics and Health Policy and co-director of the Center for Biomedical Ethics and Society at the Vanderbilt University Medical Center. She is also professor of pedi- atrics and professor of law. At Vanderbilt, she directs the Law Emphasis Program and teaches in the patient, profession, and society course in the medical school and teaches the interdisciplinary course in bioethics and law in four schools of the university. Dr. Clayton has focused primarily on issues surrounding the ethical, legal, and social implications of advances in genetics and genomics as both a scholar and a policy maker. She has served on Tennessee’s Genetics Advisory Council since the early 1990s, has participated in numerous policy and academic groups that have considered newborn screening, and is currently conducting research on the impact of false positive results in newborn screening. She has been very involved with the Human Genome Project in the United States, serving as a member of the National Advisory Council for Human Genome Research and more recently as co-chair of the Ethical, Legal, and Social Implications Working Group of the International Haplotype Mapping Project. She has also been very involved in ethical issues raised by genetics and genomics research, working with investigators and deliberative bodies around the world. She has been instrumental in the development of Vanderbilt’s DNA biobank and is currently co-chair of the Consent and Community Consultation Working Group of the eMERGE consortium, which is studying the use of electronic medical records in genome-wide association studies. She has also written about a variety of issues regarding children’s and women’s health.

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65 APPENDIX B A member of the Institute of Medicine since 2006, she has served on the Health Sciences Policy Board, on its Advisory Council, and on several IOM committees, chairing committees to evaluate Title X family planning and to evaluate the safety of vaccines. Neal Cohen, M.D., is professor of anesthesia and medicine and vice dean for the University of California, San Francisco (UCSF), School of Medi- cine. He also serves as the medical director of the International Service. Dr. Cohen received a B.A. degree from the University of Wisconsin, M.D. from UCSF School of Medicine, M.P.H. from the University of California, Berkeley, and M.S. in management from the Stanford University Graduate School of Business. Dr. Cohen is responsible for oversight and approval of all academic and clinical affiliations between the School of Medicine, other academic and clinical institutions, and industry, both nationally and internationally. He recently chaired the committee that developed the policy on industry relations and serves as chair for the task force that oversees the policy. He is currently working on the process for public disclosure of industry relationships for the University of California. Dr. Cohen was recently awarded the Lifetime Achievement Award from the American Society of Critical Care Anesthesiologists. Dr. Cohen has authored numer- ous articles and presented lectures on a wide array of topics related to the care of critically ill patients, practice management, and industry relations and their impact on innovations in health care, compliance, and regulatory affairs. Carolyn Compton, M.D., Ph.D., is the director of the Office of Bioreposi- tories and Biospecimen Research at the National Cancer Institute (NCI). In this capacity, she has leadership responsibility for strategic initiatives that include the Cancer Human Biobank (caHUB) project, the Innovative Molecular Analysis Technologies for Cancer program, and the NCI Com- munity Cancer Centers project. She is an adjunct professor of pathology at the Johns Hopkins School of Medicine. She received her M.D. and Ph.D. degrees from Harvard Medical School and the Harvard Graduate School of Arts and Sciences. She is trained and board-certified in both anatomic pathology and clinical pathology at Harvard’s Brigham and Women’s Hos- pital. She came to the NCI from McGill University, where she had been the Strathcona Professor and Chair of Pathology and the pathologist-in-chief of McGill University Health Center from 2000 to 2005. Prior to this, she had been a professor of pathology at Harvard Medical School and the Mas- sachusetts General Hospital, where she was the director of gastrointestinal pathology for 15 years. Dr. Compton has held many national and inter- national leadership positions in pathology and cancer-related professional organizations. Currently, she is the chair of the American Joint Committee

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66 ESTABLISHING PRECOMPETITIVE COLLABORATIONS on Cancer and a member of the Executive Committee of the Commission on Cancer. She has published more than 500 original scientific papers, reports, review articles, books, and abstracts. Stephen L. Eck, M.D., Ph.D., joined Eli Lilly and Company in July 2007 as the global leader of Translational Medicine and Pharmacogenomics. Translational medicine ensures that the scientific concepts that underpin new medicines are used in the design of human clinical trials and that the molecular attributes of promising new medicines can be tested in patients. Pharmacogenomics seeks to understand how genetic differences among patients contribute to differences in drug effectiveness and safety. Together these disciplines can ensure the more effective use of drug development resources and the ultimate use of medicines in the most appropriate patient population. Dr. Eck has significant experience in drug development, having previously led several oncology and neuroscience drug development groups at Pfizer. He previously served as the Neurosciences and Oncology Clini- cal Site head at Pfizer’s Ann Arbor facility. He subsequently lead a phase III oncology drug development team before being appointed vice president for translational and molecular medicine at Pfizer. Prior to joining Pfizer he served on the faculty of the University of Pennsylvania. Dr. Eck received his undergraduate training at Kalamazoo College (B.A.) and graduate train- ing in chemistry from Harvard University (M.S., Ph.D.). He subsequently joined the Monsanto Company as a senior scientist conducting oncology drug discovery research. He later received his medical training from the University of Mississippi (M.D.). After internal medicine residency and hematology-oncology fellowship training at the University of Michigan, he joined its faculty before moving to the University of Pennsylvania as the Anne B. Young Assistant Professor of Cancer Research. At the University of Pennsylvania he was the director of the Cancer Gene Therapy Program and conducted basic and clinical research in cancer therapeutics. Aled Edwards, Ph.D., is Banbury Professor of Medical Research at the Uni- versity of Toronto, visiting professor of chemical biology at the University of Oxford, and chief executive of the Structural Genomics Consortium (SGC), an Anglo-Canadian-Swedish public–private partnership created to increase substantially the number of protein structures of relevance to human health available in the public domain, without restriction on use. Funded by industry, governments, and charitable foundations, the SGC accounts for more than a quarter of the world’s output of human protein structures and more than 75 percent of the world’s output of proteins from the parasites that cause malaria, toxoplasmosis, and cryptosporidiosis. Edwards believes that the discovery of new medicines would be most efficiently accomplished by performing many aspects of drug discovery research, from discovery to

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67 APPENDIX B clinical proof of concept, within precompetitive research consortia and by deemphasizing the perceived value of patents. Edwards was scientific con- sultant for the Canadian dramatic TV series, ReGenesis, and has founded a number of biotechnology companies. kelly Edwards, Ph.D., is an associate professor in the Department of Bio- ethics and Humanities at the University of Washington School of Medicine and core faculty for the Institute for Public Health Genetics. She received an M.A. in medical ethics and a Ph.D. in philosophy of education from the University of Washington, Seattle. Her research and program responsi- bilities include serving as director of the Ethics and Outreach Core for the National Institute for Environmental Health Sciences (NIEHS)–funded Cen- ter for Ecogenetics and Environmental Health, as co-director of the Regula- tory Support and Bioethics Core for the Institute for Translational Health Sciences (a Clinical, Translational, and Science Awards [CTSA] institu- tion), and as lead investigator with the National Human Genome Research Institute (NHGRI)–funded Center for Genomics and Healthcare Equality. Her special interests include community-based research practices, biobank governance, environmental justice, everyday ethics in research practice, feminist and narrative approaches to bioethics, and integrating ethics into training programs, public conversations about science, and public policy. Marcia Eisenberg, Ph.D., earned a B.S. in biology, a B.A. in psychology, and an M.S. in molecular biology from the State University of New York at Albany. She earned a Ph.D. in molecular biology from the University of Kentucky. Her experience includes work with the National Institute of Environmental Health Sciences. Dr. Eisenberg has been a member of the Federal Bureau of Investigation’s (FBI’s) Technical Working Group on DNA Analysis Methods, and she was an appointed member of the National DNA Advisory Board during its life span. She has been recognized and honored for her contributions to the advancement of forensic DNA testing. She currently holds certification in molecular genetics and molecular oncol- ogy, forensic DNA testing, and paternity testing from the New York State Department of Health. She has been involved with the development and validation of hundreds of clinical assays used for patient care during her 20+ year tenure at LabCorp and its predecessor company Roche Biomedi- cal Laboratories. She has also developed and validated assays for clinical trial use and has participated in numbers of trials that were submitted to the Food and Drug Administration. She was initially hired to convert the then-current diagnostic testing to polymerase chain reaction-based testing, which at the time was a technology newly acquired by Roche. Dr. Eisenberg is currently a senior vice president and oversees test development, optimiza- tion, and automation for the company. She assists in review of new tests,

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68 ESTABLISHING PRECOMPETITIVE COLLABORATIONS technologies, and platforms and works with partners to transform their intellectual property into viable diagnostic assays. Lorraine Frazier, Ph.D., is the distinguished Nancy B. Willerson Professor of Nursing at the University of Texas at Houston Health Science Center (UTHSC-H) School of Nursing. She received a baccalaureate degree in nursing science from the University of Oklahoma. She received both her master’s and her Ph.D. in nursing from the UTHSC-H School of Nurs- ing. Her master’s degree focused on adults and gerontology in the nurse practitioner program. During her doctoral studies she was awarded an Individual National Research Service Award from the National Institute of Nursing Research (NINR) at the National Institutes of Health (NIH) for the proposal “Predicting Hypertension Using Blood Pressure Reactivity.” Following her doctoral program, she was a NIH fellow at the Summer Genetics Institute, a two-month intensive education program in genetics funded by the NINR at NIH. Postdoctorate education includes a 2-year postdoctoral fellowship funded by the NINR to study genetics and hyper- tension at the UTHSC-H Institute of Molecular Medicine for the proposal “Pharmacogenomic Studies of Human Hypertension.” She was awarded a Mentored Patient-Oriented Research Career Development Award (K23) from NINR to support career development that allowed a research focus on patient-oriented research. The K23 award proposal entitled “Inflamma- tory Markers and Cardiovascular Patient Outcomes” focused on genetic factors and biochemical markers as predictors of risk in a large cohort of cardiovascular patients. As part of her K23 award, she completed a mas- ter’s degree in clinical research with a focus on translational research at the UT School of Medicine. As a faculty member, she continues to study clinical design methods for clinical research in cardiovascular disease. The consistent theme throughout Dr. Frazier’s program of research has been the exploration of biological and behavioral risk factors as predictors of out- comes in patients with cardiovascular disease. Her focus is on the genetic- environmental interaction of inflammation and depression on coronary outcomes in individuals with acute coronary syndromes and heart failure. Her patient population includes acute care patients at St. Luke’s Episcopal and Ben Taub Hospitals. Dr. Frazier is the principal investigator on the 1R01NR010235-01A1 “Depressive Symptoms and Genetic Influences on Cardiac Outcomes,” funded by NINR. She is the project director of TexGen Research, which supports multi-center, multi-institutional biobank devel- opment of clinical data and biological samplings from cardiovascular and cancer patients at the Texas Medical Center. She is also the director of the Center for Clinical and Translational Science (CCTS) BioBank at UTHSC- H. These biobank efforts currently have 135,000 biological samples and corresponding clinical data and incorporate eight hospitals and six univer-

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69 APPENDIX B sities. The University of Texas Clinical and Translational Science Award recipients (UTHSC-H/UT MDACC, UT San Antonio, and UT Southwest- ern) have identified the biobank effort as a priority for Texas CCTS col- laboration. Dr. Frazier will direct the expanded biobank effort. Dr. Frazier is a fellow of the American Academy of Nursing, a fellow of the American Heart Association, and a Robert Wood Johnson executive nurse fellow. She holds memberships in numerous professional organizations. Stephen Friend, M.D., Ph.D., is the president of Sage Bionetworks, a nonprofit foundation he co-founded in August 2009, based at the Fred Hutchinson Cancer Center to encourage the sharing of clinical-genomic data and models to generate representations of disease capable of driving new therapies and diagnostics (www.sagebase.org). He was previously a senior vice president at Merck & Co., Inc., where he led Merck’s molecular profiling and then its cancer research, which in 2008 alone placed seven new oncology CMEs into clinical trials. Prior to joining Merck, Dr. Friend founded Rosetta Inpharmatics, which he led from 1997 until 2001, when he sold it to Merck for $600 million. Before that, he was recruited by Dr. Leland Hartwell to build the Fred Hutchinson Cancer Research Center’s Seattle Project, an advanced institute for drug discovery. While there, Drs. Friend and Hartwell developed a method for examining large patterns of genes that led them to co-found Rosetta Inpharmatics in 2001. Dr. Friend also held faculty positions at Harvard Medical School from 1987 to 1995 and at Massachusetts General Hospital from 1990 to 1995. Before that, he worked at the Whitehead Institute where he led the team that cloned the first tumor suppressor gene while in Bob Weinberg’s lab. Dr. Friend received his B.A. in philosophy, his Ph.D. in biochemistry, and his M.D. from Indiana University. 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, Massachusetts, where he was vice president of molecular and personalized medicine. At Millennium, Dr. Ginsburg was responsible for crafting strategy on the discovery of “bio- markers,” genetic characteristics that measure the effects or progress of a disease or condition, and their use for clinical prediction and diagnosis. Dr. Ginsburg received both his M.D. and his Ph.D. degrees from Boston University. He completed his clinical and research fellowships in molecular cardiology at Beth Israel Hospital and at Children’s Hospital in Boston. Dr. Ginsburg developed and directed the preventive cardiology service at Beth Israel Hospital in the late 1980s and has served on the faculty of Har- vard Medical School since 1990. In addition to his role in the Institute for

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70 ESTABLISHING PRECOMPETITIVE COLLABORATIONS Genome Sciences and Policy, he is a member of the faculty in the Depart- ment of Medicine at Duke University Medical Center. Cynthia Helphingstine, Ph.D., is president and chief executive officer of the Fairbanks Institute for Healthy Communities, a not-for-profit organi- zation utilizing the population of central Indiana in a novel longitudinal study that links biological specimens with clinical outcomes data from the nation’s most established and data-rich clinical data repository to enable breakthrough translational research aimed at improving patient outcomes and reducing the financial, physical, and emotional burden of chronic diseases. An entrepreneurial executive, Dr. Helphingstine has a record of successfully bringing together diverse stakeholders to create companies and launch initiatives that impact health care research. Her experience ranges from product development and clinical research positions at Baxter Health- care to translational scientific officer at BioCrossroads, Indiana’s life science initiative, where she worked to accelerate the advancement of research discoveries at Indiana University from the laboratory to the marketplace. Dr. Helphingstine holds a Ph.D. in immunology and a B.A. in microbiology from the University of Missouri-Columbia and an M.B.A. from the Lake Forest Graduate School of Management in Lake Forest, Illinois. Thomas R. Insel, M.D., is the director of the National Institute of Mental Health (NIMH). In this role, since 2002, he has led the nation’s investment for research on the causes and treatments of mental disorders. His tenure at NIMH has been marked by a commitment to the problems of individu- als and families with serious mental illness, with a focus on specific public health outcomes. In addition to his leadership of NIMH, Dr. Insel serves as the chair of the Interagency Autism Coordinating Committee for the Sec- retary of the Department of Health and Human Services. While trained as a physician (graduating from the combined B.A.-M.D. program at Boston University in 1974) and a psychiatrist (completing residency at the Lang- ley Porter Neuropsychiatric Institute at the University of California, San Francisco, in 1979), Dr. Insel spent most of his scientific career as a basic neuroscientist focused on the molecular basis of complex social behaviors, such as social attachment. Prior to his current position at NIMH, Dr. Insel served as director of the Yerkes Regional Primate Center (1994-1999) at Emory University and founding director of the Center for Behavioral Neu- roscience (1999-2002) in Atlanta, Georgia. He has published more than 250 scientific articles and four books, including Neurobiology of Parental Care (with Michael Numan) in 2003. He is a member of the Institute of Medicine (IOM) and a recipient of many awards, including the 2010 Ipsen Prize.

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71 APPENDIX B Sally John, Ph.D., joined Pfizer in 2007 and is currently the head of the Human Genetics Group within the Molecular Medicine organization. Dr. John’s group focuses on applying human genetics to support drug discovery and development, from identification of new targets through to understand- ing genetic variability in drug response. Prior to joining Pfizer, Dr. John was a senior lecturer in genetic epidemiology at the University of Manchester, United Kingdom, where she built up a publication record in complex dis- ease genetics. Dr. John has previous industry experience: at AstraZeneca she was responsible for inflammatory genetics and she established the statistical genetics group there. Her main focus of research has been in the area of inflammatory genetics, including rheumatoid arthritis and asthma, and also genetic epidemiology methods as applied to the analysis of complex traits. Dr. John gained a Ph.D. in molecular biology in 1994 from the University of Manchester, UK. Garry Neil, M.D., is corporate vice president, Corporate Office of Science and Technology, Johnson & Johnson (J&J). In this role, Dr. Neil leads a team that catalyzes sustained growth for J&J by identifying and launch- ing emerging technologies that underpin the creation of future businesses. Dr. Neil has broad experience in science, medicine, and pharmaceutical development. He has held a number of senior positions within J&J, most recently group president, Johnson & Johnson Pharmaceutical Research and Development (J&JPRD), where he was responsible for maximizing existing strengths and leveraging collective resources to bring innovative new molecular entities to market quickly and cost effectively. Through a number of new initiatives he helped transform J&J’s pharmaceutical R&D to a much more capable and productive organization and helped recruit a number of top scientists. Under his leadership a number of important new medicines for the treatment of cancer, anemia, infections, central nervous system and psychiatric disorders, pain, and genitourinary and gastrointes- tinal diseases gained initial, new, and/or expanded indication approvals. Dr. Neil joined J&J in 2002 as senior vice president of Drug Development at J&JPRD. In 2005, he became president of J&JPRD, and in 2006, was promoted to group president. Before joining J&JPRD, Dr. Neil held senior- level positions with Astra Merck Inc., Astra Pharmaceuticals, AstraZeneca, and Merck KGaA. He has also held a number of posts at academic insti- tutes including the Ludwig Institute for Cancer Research, the University of Toronto, the University of Iowa College of Medicine, and the University of Pennsylvania (adjunct). He also completed a postdoctoral research fel- lowship at the Research Institute of Scripps Clinic. He is a fellow of the American College of Physicians, a fellow of the American College of Gas- troenterology, and a member of the American Association of Immunolo- gists, and of the Society for Clinical Trials. He is a member of the Board

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72 ESTABLISHING PRECOMPETITIVE COLLABORATIONS of the Reagan Udall Foundation and the J&J Development Corporation, and he is J&J’s representative to, and vice chairman of, the Pharmaceutical Research and Manufacturers Association (PhRMA) Science and Regula- tory Committee, vice chairman and treasurer of the PhRMA Foundation Board, a member of the Board of Trustees for the Robert Wood Johnson Medical School, a member of the Scientific Advisory Board of the Center for Advanced Biotechnology and Medicine (Rutgers), a member of the Executive Committee of the Biomarkers Consortium, and a member of the Board of Trustees of the Newark Boys Chorus School. He is also the 2007 discovery awardee of the American Geriatrics Society. He holds a Bachelor of Science degree from the University of Saskatchewan and a medical degree from the University of Saskatchewan College of Medicine; he completed his postdoctoral clinical training in internal medicine and gastroenterology at the University of Toronto. Aidan Power, M.b., b.Ch., M.Sc., M.R.C.Psych., has been vice president and global head of Molecular Medicine since January 2008. Molecular Medicine represents a synthesis of all the emerging technologies and opera- tions (computational science, imaging, pharmacogenomics, metabolomics, proteomics, physiological measurements, diagnostics) that form the scien- tific basis of emerging approaches to the development of personalized medi- cine. Graduating in medicine from University College Cork, Ireland, Dr. Power trained as a psychiatrist in England and joined Pfizer in the United Kingdom in 1993 to work on the antidepressant sertraline and the antipsy- chotic ziprasidone. In 2002, Dr. Power relocated to Pfizer Global Research and Development Headquarters in New London, Connecticut, where he headed clinical pharmacogenomics. Over the last year he has headed up molecular medicine, which has been integrating molecular studies across disease areas as well as developing diagnostics for critical programs in the Pfizer product pipeline. William J. Spencer, Ph.D., D.Sc., retired as chairman of SEMATECH after earlier serving as president and CEO. Before joining SEMATECH, he was a group vice president and the senior technical officer of Xerox. He started his career at Bell Labs and held management positions at Sandia National Laboratories. He holds the position of research professor at the New Mex- ico School of Medicine and was a regents professor at Berkeley. He received the Regents Medal from the University of New Mexico; he is a fellow of the Polytechnic University of Brooklyn and of Kansas State University, where he received a Ph.D. in physics. He is a member of the National Academy of Engineering and a fellow of IEEE. He is a member of the athletic hall of fame and received doctor of science recognition from William Jewell

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73 APPENDIX B College. He and his wife Joan enjoy opera, the symphony, hiking, skiing, tennis, and just walking in the cities where they reside. Sharon Terry, M.A., is president and CEO of the Genetic Alliance, a coali- tion 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 orga- nization 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 government advi- sory committees on medical research, including the FDA 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 indus- try working to enact effective federal policy to prohibit genetic informa- tion 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 co-founder of the Genetic Alliance Bio- bank 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 partner- ship with academic and industrial collaborators to develop novel diagnos- tics 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 its invention. She co-directs a 19-laboratory research consortium and manages 52 offices worldwide for PXE International. Martha Turner, Ph.D., R.N., is currently the assistant director of the Ameri- can Nurses Association (ANA) Center for Ethics and Human Rights and an adjunct professor in the Department of Preventive Medicine and Biometrics, School of Medicine, Uniformed Services University of the Health Sciences (USUHS). She is co-director and lecturer for the public health ethics course (PMO 991). A recently retired Air Force Colonel, Dr. Turner was the con- sultant for health care ethics to the Air Force Surgeon General from 1998 until 2006. She represented the Department of Defense as an ex officio member of the Secretary’s (HHS) Advisory Committee for Genetics, Health and Society (SACGHS). During the three years with SACGHS she became familiar with challenges associated with the development of new technolo-

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74 ESTABLISHING PRECOMPETITIVE COLLABORATIONS gies and other scientific advances in genetics and genomics. On behalf of the ANA she reviewed and submitted comments on the draft reports “Policy Issues Associated with Undertaking a Large U.S. Population Cohort Project on Genes, Environment, and Disease” (2006) and “Realizing the Promise of Pharmacogenomics: Opportunities and Challenges” (2007). Her under- standing of the challenges and opportunities for health professionals is demonstrated by her experience at the USUHS, where she teaches applied ethics courses in the M.P.H. and Ph.D.-Dr.P.H. programs. Additional activi- ties have included membership on the TriService Nursing Research Program Advisory Council, various scientific review panels, the editorial board for the Journal of Nursing Staff Development, and the USUHS Institutional Review Board. Research, projects, and policy work have addressed pain management, end-of-life care, air evacuation of patients, care of those imprisoned, and other topics related to health care delivery in diverse environments. Dr. Turner has been participating on behalf of ANA at the American Society for Bioethics and Humanities, National Coalition for Health Professional Education in Genetics, and International Society of Nurses in Genetics meetings. Additionally, she has been collaborating with a national work group in planning and strategizing on implementation of the nursing core competencies approved and endorsed by the national nursing community. Martin yuille, Ph.D., is co-director at the Centre for Integrated Genomic Medical Research and reader in biobanking at the University of Manches- ter, deputy lead of Manchester Academic Health Science Centre Infrastruc- ture and Technology, and associate coordinator of the European research infrastructure project preparation in biobanking. His primary research interest is in the development of research infrastructure that will best serve the emerging needs of biomedical research.