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Colloquium I



Planning for the Future

AAAS Headquarters | 1200 New York Ave., NW | Washington, DC

Colloquium I
Diagnostics and Diagnoses
Paths to Personalized Medicine

Speaker and Session Chair Biographies


N. Leigh Anderson, Ph.D. is Founder and CEO of the Plasma Proteome Institute, Washington D.C. ( The Institute aims to foster a comprehensive exploration of the proteins of human blood plasma (the plasma proteome), systematic validation of candidate protein markers, rapid application of novel protein markers in clinical diagnostics, and a broader awareness of the role of protein diagnostics in improving health care. Prior to founding PPI, Dr. Anderson was Chief Scientific Officer at Large Scale Biology Corporation (LSBC), whose proteomics division he founded in 1985 and led as CEO prior to its merger in 1999 with Biosource Technologies. At LSBC, he developed the first automated two-dimensional electrophoresis technology platform for proteomics research and co-led a successful IPO based largely on the proteomics technology platform.

Dr. Anderson obtained his B.A. in Physics with honors from Yale and a Ph.D. in Molecular Biology from Cambridge University (England) where he was a Churchill Fellow at the MRC Laboratory of Molecular Biology. Subsequently he founded (with Dr. Norman Anderson) the Molecular Anatomy Program at the Argonne National Laboratory (Chicago), where his work earned him several awards, including the American Association for Clinical Chemistry’s Young Investigator Award for 1982. Dr. Anderson has published more than 140 scientific papers, one book and 37 issued patents. He currently serves on the Board of Directors of Luna Innovations (a developer of novel materials and sensors).


Ms. Avey has over 20 years of sales and business development experience in the biopharmaceutical industry in San Francisco, Boston, San Diego, and Washington, D.C. Prior to starting 23andMe, she developed translational research collaborations with academic and pharmaceutical partners for Affymetrix and Perlegen Sciences. She also spent time at Spotfire helping scientists understand the power of data visualization and at Applied Biosystems during the early days of the human genome project. The advent of high density genome-wide scanning technologies brought huge potential for significant discoveries. However, the lack of sufficient funding to enable adequate studies prompted her to think of a new research model. These ideas led to the formation of 23andMe. Her primary interest is the acceleration of personalized medicine, using genetic profiles to target the right drug to the right person at the correct dose. She graduated from Augustana College with a B.A. in biology.


Dr. Borsook, a Neurologist and Neurobiologist, is an Associate Professor at Harvard Medical School and has appointments in the Department of Psychiatry at McLean Hospital, the Department of Radiology and Psychiatry at Massachusetts General Hospital (MGH), and the Department of Radiology at Children’s Hospital Medical Center.  He was the Director of the MGH Pain Program for five years and participated in a number of national and international pain programs, including the WHO Cancer Pain Initiative in China.  In 1994, while at MGH, he established a research program investigating the use of fMRI in pain and analgesia with the support of NIH and other non-profit research foundations.  In 2002 he left the MGH and, together with his colleagues, founded Descartes Therapeutics, Inc., a venture backed biotech that aimed to use fMRI in drug development.  He served as the Chief Scientific Officer and Executive Vice President for that company. In 2004 he returned to academia where he has led two programs – the P.A.I.N. Group and the Imaging Center for Drug Development (ICD) – a pre-competitive program to evaluate the efficacy of imaging in drug development.    He has also discovered a drug for cancer pain that is now in Phase 2a Trials.  He consults for a number of pharmaceutical and biotechnology companies in the field of pain, analgesics and imaging.  He has published extensively including three books and over 85 peer reviewed journals.


Sarah Botha is a staff attorney at the Federal Trade Commission’s Division of Advertising Practices within the Bureau of Consumer Protection, where she focuses on enforcing laws and developing policy related to the advertising of food, drugs, dietary supplements, and other consumer products.  Ms. Botha contributed to the FTC’s recent study entitled, “Marketing Food to Children and Adolescents:  A Review of Industry Expenditures, Activities, and Self-Regulation.”  Currently, she serves as an Ex Officio member of the Secretary’s Advisory Committee on Genetics, Health, and Society.  Ms. Botha graduated from Columbia Law School in 2003.  Prior to joining the FTC in 2006, Ms. Botha worked in private practice, focusing on issues related to the advertising of food and drugs, prescription drug approval and regulation, and consumer product safety.


Ruth Schwartz Cowan is the Janice and Julian Bers Professor of the History and Sociology of Science at the University of Pennsylvania. A historian or science, technology, and medicine, she was previously on the faculty of the State University of New York at Stony Brook. Professor Cowan is the author or co-author of five books and numerous articles. Her books are The Social History of American Technology, Our Parents’ Lives, Sir Francis Galton and the Study of Heredity in the Nineteenth Century, More Work for Mother, and Heredity and Hope. Her next project is a history of American women engineers.

Professor Cowan has been a Fulbright Scholar, a Guggenheim Fellow, a Phi Beta Kappa lecturer, and a Sherman Fairchild Distinguished Scholar at the California Institute of Technology. She has been awarded the Leonardo da Vinci Medal, the Dexter Prize of the Society for the History of Technology, and the J.D. Bernal prize of the Society for the Social Study of Science.  She is also a Fellow and Trustee of the College of Physicians of Philadelphia. She is a past president of the Society for the History of Technology and has been a member of the Smithsonian Council and of the IEEE History Committee. She currently serves on the Executive Committee of the Philadelphia Area Center for the History of Science and on the Visiting Committee for the Humanities at MIT. Dr. Cowan received her doctorate from the John Hopkins University.


Dr. William Dalton is President, Chief Executive Officer and Center Director of the Moffitt Cancer Center and Research Institute in Tampa, Florida. Dr. Dalton received his Ph.D. in toxicology and medical life sciences and his M.D. degree from Indiana University.  He completed his internship in Internal Medicine at Indiana University and his residency in Medicine at the University of Arizona in Tucson.  He completed fellowships in Oncology and Clinical Pharmacology at the University of Arizona.

Prior to assuming his current position, Dr. Dalton was the Founding Director of the Bone Marrow Transplant Program at the University of Arizona and the Dean of the College of Medicine at that university. Dr. Dalton has been involved in cancer research for two decades and has authored or co-authored numerous articles on the subject and served on the editorial boards of several journals. He currently serves on the NCI Board of Scientific Advisors and was the past Chair of the NCI Experimental Therapeutics Study Section.  He also serves on numerous Scientific Advisory Boards for cancer centers and research foundations. His research interests include biochemical mechanisms of drug resistance and new drug discovery.  He is also interested in developing approaches to enhance access to health care and developing evidence-based methods of evaluating and integrating new technologies into the standard of care.


Jill Davies is a Genetic Consultant at the Medcan Clinic, Canada’s leading preventive health care clinic. She has over 10 years of experience in genetic counseling and has worked in partnership with Dr. Lea Velsher (medical geneticist) to develop a preventive genetic service at Medcan.  The Medcan Genetics program is part of a multidisciplinary team of health care providers who help individuals to manage health risks through screening, education and early intervention.

Prior to joining Medcan, Jill provided genetic counseling services related to prenatal and general genetics at the Rouge Valley Health System, a community based hospital in Toronto, Canada.  During her years in practice, she has provided a range of genetic services, from classical genetics to genomics, including pharmacogenomic testing.  Her special interest is in the role of genetics in primary care and preventive medicine.  Her focus is to bring the most advanced genetics knowledge to individuals to help them optimize health and manage risk for disease.

Jill received her Master of Science degree in Genetic Counseling from the University of Manchester, UK.  She is a Canadian board certified genetic counselor and an active member of the Canadian Association of Genetic Counselors (CAGC).


Dr. Downing was appointed in March 2006 as Program Director for the Department of Health and Human Services (HHS) initiative on Personalized Health Care.  In this role, he coordinates trans-HHS agency programs for the analysis, planning and implementation of policies and systems to facilitate integration of technologies to advance the quality of health care.

Prior to coming to HHS, Dr. Downing served at the National Institutes of Health since 1993 in research, policy, and program management roles. Dr. Downing earned his medical degree from Michigan State University and his Ph.D. in pharmacology from the University of Kansas.  He completed his residency in pediatrics and fellowship in neonatology before joining the faculty of the University of Missouri-Kansas City in the Department of Neonatology at The Children’s Mercy Hospital.  Dr. Downing is certified by the American Board of Pediatrics in pediatrics and neonatology — perinatal medicine.


Dr. Frankel has been director of the Scientific Freedom, Responsibility and Law Program at AAAS since 1990. He develops and manages AAAS’s activities related to professional ethics, science and society, and science and law.  At AAAS he has directed projects on research integrity and scientific misconduct; human enhancement; the ethical and legal implications of genetic testing; an examination of errors in health care organizations; the ethical, religious and policy implications of human stem cell research; gene doping in sport; and the implications of advances in neuroscience research for the legal system, among others.  He is a member of the Science and Ethics Advisory Group for Hoffmann-La Roche in Basel, Switzerland.

Dr. Frankel is a former member of the Board of Directors of the National Patient Safety Foundation, and currently serves on the Board of the Food and Drug Law Institute and the Center for the Study of Law, Science and Technology at Arizona State University.   He is on the editorial boards of Science and Engineering Ethics, Ethics & Behavior, Professional Ethics, and the Journal of Empirical Research on Human Research Ethics.  He is editor of AAAS’s quarterly publication, Professional Ethics Report, and a Fellow of AAAS.


Dr. Harper studied at the Johns Hopkins University School of Medicine where she received her Ph.D. in Biochemistry, Cellular, and Molecular Biology.  After leaving Johns Hopkins in 2003, she joined the FDA’s Center for Devices and Radiological Health as a scientific reviewer in the Office of In Vitro Diagnostic Device Evaluation and Safety.  Currently, as the Acting Director of the Division of Chemistry and Toxicology devices and as a member of the Genetics IVD Workgroup, she is involved in many diverse activities including premarket clearance/approval, manufacturer assistance, post market regulatory compliance actions, and the development of FDA Guidance for diagnostic devices.  In addition, she developing fields of Pharmacogenomics, clinical genetic testing, and biomarker development/validation.


Richard Hockett is the Chief Medical Officer at Affymetrix in Santa Clara, CA, where his responsibilities include applied genomics, new technology development, and regulatory affairs. Special areas of focus are molecular diagnostics, clinical application of technology, and biomarker strategies. Prior to joining Affymetrix, Dr. Hockett was a Medical Fellow II, Group Leader for Genomic Medicine at Eli Lilly and Company, where he developed the pharmacogenomic program and oversaw the application of genetic biomarkers to clinical drug development. While there, he was instrumental in developing the DMET analysis system. Prior to joining Lilly, Dr. Hockett worked in the Department of Pathology at the University of Alabama at Birmingham, where he oversaw the Clinical Immunology and Molecular Diagnostic Laboratories. His research has focused on developmental immunology and HIV disease. Dr. Hockett received his M.D. degree from the University of Minnesota, and did his residency in Clinical Pathology at Washington University, St. Louis.


Dr. Hudson is the founder and Director of the Genetics and Public Policy Center and an Associate Professor in the Berman Institute of Bioethics, Institute of Genetic Medicine, and the Department of Pediatrics at The Johns Hopkins University. She leads the Center’s efforts to address legal, ethical, and policy issues related to human reproductive genetic technologies, genetic testing quality and oversight, and public engagement in genetic research.

Hudson serves on the AAAS Committee on Science, Engineering and Public Policy, the Institute of Medicine Roundtable on Translating Genomic Based Research for Health, the CDC Evaluation of Genomic Applications in Practice and Prevention Stakeholders Group, the Genome Canada Science and Industry Advisory Committee, the National Governors Association Health Information Protection Taskforce, the Social Issues Committee of the American Society of Human Genetics, the Guttmacher Institute Board of Directors, and the Annual Review of Genomics and Human Genetics Editorial Board. She has published articles about and is a frequent speaker on issues related to biotechnology, genetics, and public policy.

Before founding the Genetics and Public Policy Center, Hudson was the Assistant Director of the National Human Genome Research Institute (NHGRI), a senior policy analyst in the Department of Health and Human Services, and worked on Capitol Hill. She holds a Ph.D. in Molecular Biology from the University of California at Berkeley.


Dr Jacques joined CMS in 2003 and has been director of the Division of Items and Devices in the Coverage and Analysis Group since 2004.  The division reviews evidence and develops Medicare coverage policy for Part B drugs and biologicals, medical imaging and durable medical equipment. Prior to his arrival at CMS, Dr. Jacques was the Associate Dean for Curriculum at Georgetown University School of Medicine, where he retains a faculty appointment.  He served on a number of university committees including the Executive Faculty, Committee on Admissions and the Institutional Review Board.  He previously worked in the Palliative Care program at Georgetown’s Lombardi Cancer Center where he covered the gynecologic oncology service and he made home visits as a volunteer physician for a rural hospice on the Maryland Eastern Shore.

Following graduation from Georgetown University in 1978, he entered the University of Maryland School of Medicine, graduating in 1982.  He completed residency in 1985 and was National Health Service Corps assignee to Peoples Community Health Clinic in Waterloo Iowa for four years.  From 1989 to 1995 he saw primary care patients while also holding a variety of administrative and academic positions at Henry Ford Health Systems and Wayne State University School of Medicine in Detroit.  His research interests and publications focused on injury prevention, physician workforce issues, and medical education.


James Kelly is the President & CEO of the Food and Drug Law Institute (FDLI) a leading not-for-profit educational organization serving  professionals who need to understand the laws, regulations, and policies affecting food, drugs, cosmetics and other  healthcare technology products, including individuals active within government, industry, law, health care and academia sectors.  Before joining FDLI, Mr. Kelly was President & CEO at Carl Zeiss, Inc., the U.S. subsidiary of the German-based manufacturer of precision optics. At Zeiss, Mr. Kelly held a variety of executive positions, including general manager for the Microscopy Group, general counsel and vice-president corporate marketing. Prior to Zeiss, he served as vice-president, general counsel and, later, head of human resources at Siemens Medical, one of the largest health care industry suppliers in the world. He has also served as vice-chairman of the German-American Chamber of Commerce in New York. Mr. Kelly began his career in the general practice of law in New York City after earning his JD from Villanova Law School.


Paula Kim is a long-time advocate for patients and multidisciplinary approaches to cancer and health care research who consults, writes, and conducts research on ways to harmonize the efforts of clinicians, scientists, public agencies, industry, and patients.  She is the CEO and Chairman of Translating Research Across Communities – TRAC, a global healthcare consulting firm with a strong focus on outreach and cross-sector interactions.  TRAC partner projects include work with non-profit organizations, public agencies, and the private sector.

In 1999, she was a co-founder and served as the founding Chairman of the Pancreatic Cancer Action Network, Inc. (PanCAN), the disease’s first and, at that time, only national patient advocacy organization, later serving as President through 2004.  More recently, Paula has regularly contributed to a number of governmental cancer and health initiatives including the National Institutes of Health, National Cancer Institute (NCI) Biospecimen Coordinating Committee, NCI Board of Scientific Advisors, Directors Consumer Liaison Group, Clinical Trials Gastrointestinal I Steering Committee, Patient Advocacy Steering Committee,  CaBIG, and the FDA Patient Consultant Liaison Program.  In the community, Paula served as co-chair of the Tissue Access Working Group which helped to develop the National Biospecimen Network blueprint. Current and prior service includes the National Accreditation Program for Breast Centers, C-Change, National Coalition for Cancer Research, National Pancreas Foundation, American College of Radiology Imaging Network, and serving as an external advisor to numerous research and advocacy programs in the United States and abroad.


Dr. Levy is Clinical Director of the Johns Hopkins University Internal Medicine practice at Green Spring Station.  He received his Ph.D. in Human Genetics and his M.D. from the University of Maryland.  He completed a fellowship in Medical Genetics at the National Human Genome Research Institute (NHGRI), NIH and is board certified in Internal Medicine and Clinical Genetics.  His clinical and research interests include Ehlers Danlos syndrome and related disorders of connective tissue, primary care of adults with genetic conditions, genetic risk assessment for common complex diseases, and integration of genetics into primary care medicine. He provides medical services for adults with a wide variety of genetic disorders as well as primary care patients, with whom he emphasizes genetic principles to improve routine care and preventive medicine.

Dr. Levy is active in several educational programs developed by the National Coalition for Health Professional Education in Genetics.  He serves on the advisory boards of the Ehlers Danlos, Cornelia de Lange and Joubert syndrome foundations.  He chairs the Adult Genetics Special Interest Group of the American College of Medical Genetics and is a member of the Information and Education committee of the American Society of Human Genetics and the Executive committee of the Johns Hopkins/NHGRI Genetic Counseling Training Program.  Dr. Levy is co-founder and co-Editor-in-Chief of GeneFacts, an Internet-based resource under development to answer health care providers’ genetics questions at the point of care.


Caol Ley is Medical Director at 3M, a large multinational company with a diverse portfolio of products.  In this corporate role, she is responsible for managing the occupational medicine section, which includes physicians, nurses, epidemiologists, and exercise physiologists. The Occupational Medicine section is responsible for governance of 3M facility medical programs on a worldwide basis. Public health strategies for the corporation, including pandemic planning, are also the responsibility of the section. 
Dr. Ley is particularly interested in quality medical care and patient safety.  She has held a variety of leadership positions with the National Patient Safety Foundation, including Chair, and currently serves on its board.  She is on the editorial board for the Journal of Patient Safety and serves as a peer reviewer for that journal. Previously she served on the board of directors of The Institute for Clinical Systems Improvement and as co-chair of the AAAS-American Bar Associatin National Conference of Lawyers and Scientists. She is Past-Chairman of the Board of Trustees of the University of Minnesota Medical Hospital, is the Chairman of the Fairview System Quality and Patient Safety Committee and is on the Board of Trustees of the Fairview System.


Klaus Lindpaintner graduated from the Innsbruck University Medical School with a degree in Medicine and from Harvard University with a degree in Public Health. He pursued postgraduate training and specialization in Internal Medicine, Cardiology, and Genetics in the United States and Germany and holds board certifications in these specialties. He practiced interventional cardiology and pursued academic research in the area of cardiovascular disease, molecular genetics, and genetic epidemiology, most recently as an Associate Professor of Medicine at Harvard Medical School.

He joined Hoffman-La Roche in 1997 and serves currently as Director of the “Roche Molecular Medicine Laboratories” in Basel, and Global Head, Molecular Medicines Policy and External Affairs, coordinating the company’s efforts and activities in implementing biomarker research based on genetics, genomics, proteomics, and associated disciplines across the value chain from early discovery to late stage clinical trials. He has co-authored more than 200 scientific papers, and currently holds honorary and adjunct professorships at the University of London Guy’s and St. Thomas, Jiao Tong University in Shanghai, Stanford University, and the University of Vienna. He has served on numerous working groups and advisory panels for trade organizations, regulatory authorities, and non-governmental institutions on issues related to ethical and societal impact of novel technologies in biomedicine.


Dr. Manolio is Director of the Office of Population Genomics of the National Human Genome Research Institute, NIH.  She received her M.D. from the University of Maryland in 1980 and her Ph.D. in human genetics/genetic epidemiology from Johns Hopkins University in 2001.  She joined the National Heart, Lung, and Blood Institute in 1987, where she was heavily involved in large-scale cohort studies like the Cardiovascular Health Study and the Framingham Heart Study.  She moved to NHGRI in 2005 to lead efforts in applying genomic technologies to population research, including the Genes, Environment, and Health Initiative (GEI), the Electronic Medical Records and Genetics (eMERGE) Network, and the NHGRI Genome-Wide Association Catalog.She is the author of over 200 original research papers and has research interests in genome-wide association studies of complex diseases and ethnic differences in disease risk.


Joseph McInerney received his MS in human genetics and genetic counseling from the State University of New York at Stony Brook, in 1976. He then spent more than two decades at the Biological Sciences Curriculum Study (BSCS), in Colorado, where he was director for 14 years and wrote textbooks and other educational materials in biology, with a focus on genetics and evolution. Since October 2000, McInerney has been executive director of NCHPEG – the National Coalition for Health Professional Education in Genetics – where he continues to develop educational materials in human genetics and genetic medicine for a broad range of health professionals.

In addition to his educational publications, McInerney has published more than 100 articles, chapters, and reviews in the scientific and science-education literature. He served on the editorial board of the Quarterly Review of Biology for 20 years and Community Genetics for 10 years. In 1996, he was elected a fellow in the American Association for the Advancement of Science, in recognition of his contributions to science education. In 2005, McInerney received the award for excellence in human genetics education from the American Society of Human Genetics, and the Natalie Weissberger Paul Award for national achievement from the National Society of Genetic Counselors. He also is the recipient of the 2009 Special Recognition Award from the National Human Genome Research Institute and the 2009 Art of Advocacy Award from Genetic Alliance.


Beatrice O’Keefe is Acting Chief at the California Department of Health Services (CDHS), Laboratory Field Services.  She is responsible for facility and personnel licensing of 18,000 laboratories and 60,000 personnel.  After receiving her B.S. in Biology Science from the University of California, Berkeley, M.B.A. from Golden Gate University, San Francisco, California Certificate to become a Clinical Laboratory Scientist, and California License to become a Public Health Microbiologist, Ms. O’Keefe came to CDHS, where she has worked as a Virologist, Examiner, Program Manager, Compliance Officer, and Section Chief.  Among her responsibilities, she has reviewed, edited, and approved reports for CLIA and State sanction actions of laboratories, served as Laboratory Field Services consultant to MediCal Medical Review Branch and Payments Division, as well as inspected over 500 laboratories for compliance with Federal CLIA and California Clinical Laboratory Regulations.


Deborah Runkle is a Senior Program Associate at AAAS.  She provides staff support for the Committee on Scientific Freedom and Responsibility, is the Associate Staff Officer for the National Conference of Lawyers and Scientists (a joint standing committee of AAAS and the Science and Technology Law Section of the American Bar Association), and is Staff Liaison for the AAAS Scientific Freedom and Responsibility Award.

She is interested in issues at the intersection of science and society and science and law.  Issues that she is currently focused on include personalized medicine, digital technologies, judicial education in neuroscience, scientific expertise in the courts, forensics, and the use of animals in research.


Pamela Sankar is an Associate Professor of Bioethics in the Department of Medical Ethics and a Senior Fellow at the Leonard Davis Institute of Health Economics and at the Center for Bioethics at the University of Pennsylvania. She holds degrees in the History of Ideas, Anthropology, and Communications, and completed a post-doctoral fellowship in Health Services Research. Before joining the faculty at the University of Pennsylvania Dr. Sankar worked in child and maternal health projects in western and southern Africa.

Dr. Sankar’s research concerns the ethical conduct of research involving human subjects and examines miscommunication between researchers and subjects that lead to ethical conflicts. Her current research focuses on the use of race and ethnicity as variables in genetics research and on how physician and scientist understanding of these concepts shapes interactions with patients and research subjects and contributes to public discourse on science and genomics.  Dr. Sankar has served often as a member of working groups and advisory boards concerned with genetics and ethics and currently serves on the Ethics Advisory Committee of the Banco Nacional de AND (DNA Bank of Spain), the Ethics Subcommittee of the Advisory Committee to the Director, CDC, and the National Coalition for Health Professional Education in Genetics. Dr. Sankar’s research and scholarship have been funded by the National Institutes of Health, the Ayer Foundation, the Greenwall Foundation, and the Charles E. Culpeper Foundation.


Juli Staiano joined the American Association for the Advancement of Science as Director of Development in March 2008.  Prior to coming to AAAS, she served at the Foundation for the National Institutes for seven years.  As Director of Partnership Development, she implemented a model of public-private partnership designed to accommodate the unique challenges and policies facing private-sector and government partners in order to facilitate joint investment—both financial and intellectual—in biomedical research. As a culmination of this work, she led efforts to conceptualize, organize and launch The Biomarkers Consortium, a Foundation-managed collaboration linking partners from across sectors to discover, develop, and qualify biomarkers to support drug development, preventive medicine, and medical diagnostics.  As Director of Strategic Initiatives, she investigated and documented various models of research collaboration and best practices to ensure their success. In just over a decade, she has both led and supported fundraising efforts resulting in hundreds of millions of dollars in philanthropic funding for the arts and sciences from foundations, corporations and individuals.


Dr. Dietrich Stephan is the President and CEO of the Ignite Institute for Individualized Health, a non-profit translational genome institute in the National Capital area focused on using new and integrated personalized medicine strategies to transform the health care system to maximize health and wellness, and reduce costs so that more individuals can obtain care. He is also chairman of the National Institutes of Health (NIH) Neuroscience Microarray Consortium. A human geneticist who works to understand the root causes of common human diseases so that early diagnostics and interventions can be implemented, Dr. Stephan was previously the Deputy Director for Discovery Research at the Translational Genomics Research Institute (TGen) which is a non-profit genome institute, where he oversaw the research program. Dr. Stephan has identified genes that predispose to ten monogenic disorders like autism, exercise-induced heart attacks and sudden infant death syndrome. He has previously held faculty appointments at Johns Hopkins University, the National Human Genome Research Institute of the NIH, the University of Arizona, and George Washington University. He also founded start-up companies like Amnestix, Inc., Navigenics, Inc. and Aueon, Inc.

Dr. Stephan received his Ph.D. at the University of Pittsburgh, and trained as a fellow at the National Human Genome Research Institute of the NIH. Dr. Stephan sits on numerous advisory boards including the SAGE BioNetworks initiative aimed at in silico modeling of cellular networks for drug development.


Sharon Terry, a former college chaplain, is President and CEO of the Genetic Alliance, a network that promotes an environment of openness centered on the health of individuals, families and communities.  She is the founding Executive Director of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which she and her husband founded following the diagnosis of their two children with the disorder. She co-directs a 33-lab research consortium and manages 52 offices worldwide for PXE International.

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 HHS Standards Committee for Health Information Technology and the National Advisory Council for Human Genome Research, NHGRI, NIH. She serves on several boards, including GRAND Therapeutics and the Center for Information & Study on Clinical Research Participation. She is the chair of the Coalition for Genetic Fairness that was instrumental in the passage of the Genetic Information Nondiscrimination Act, is a member of the IOM Roundtable on Translating Genomic-Based Research for Health, and chairs the Social Issues Committee of American Society of Human Genetics. In 2007 she received the first Patient Service Award from the UNC Institute for Pharmacogenomics and Individualized Therapy.  Ms. Terry is a co-founder of the Genetic Alliance Biobank, a centralized biological and data repository catalyzing translational genomic research on rare genetic diseases.


Updated 01 Jun 2011


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