R. Alta Charo, J.D. (Co-Chair), is a member of the National Academy of Medicine, and is the Warren P. Knowles Professor of Law and Bioethics and the Sheldon B. Lubar Distinguished Research Chair in Law at the University of Wisconsin–Madison, where she is on the faculties of the law and medical schools and teaches public health law, biotechnology regulation, and bioethics. She received her B.A. in biology from Harvard University and J.D. from Columbia University. Professor Charo was a member of President Obama’s transition team, focusing on science policy, and from 2009 to 2011 was a senior policy advisor on emerging technology issues in the Office of the Commissioner at the U.S. Food and Drug Administration. Her other federal service includes the congressional Office of Technology Assessment, the U.S. Agency for International Development, the National Institutes of Health Human Embryo Research Panel, and President Clinton’s National Bioethics Advisory Commission. At the National Academies of Sciences, Engineering, and Medicine she co-chaired (with Richard Hynes) the Committee on Guidelines for Embryonic Stem Cell Research and has been a member of the Board on Life Sciences; Board on Population Health and Public Health Practice; Committee on Science, Technology, and Law; and Board on Health Sciences Policy.
Richard O. Hynes, Ph.D. (Co-Chair), is Daniel K. Ludwig Professor for Cancer Research at the Massachusetts Institute of Technology (MIT) and an investigator at the Howard Hughes Medical Institute. He received his B.A. in biochemistry from the University of Cambridge, United Kingdom,
and his Ph.D. in biology from MIT in 1971. After postdoctoral work at the Imperial Cancer Research Fund in London, where he initiated his work on cell adhesion, he returned to MIT as a faculty member. Dr. Hynes is a fellow of The Royal Society of London, the American Academy of Arts and Sciences, and the American Association for the Advancement of Science, and is a member of the National Academy of Sciences and the National Academy of Medicine. He has received the Gairdner Foundation International Award for achievement in medical science and the Pasarow Award for Cardiovascular Research. He was previously associate head and then head of the Biology Department and served for 10 years as director of the MIT Center for Cancer Research. He was a governor of the Wellcome Trust U.K. from 2007 to 2016. At the National Academies he has previously co-chaired (with Jonathan Moreno and R. Alta Charo) committees on guidelines for human embryonic stem cell research.
David W. Beier, J.D., is a managing director of Bay City Capital and has been with the firm since 2013. He is a globally recognized leader in health care policy, pricing, intellectual property, government affairs, regulatory affairs, health care economics, and product commercialization. In addition, having spent two decades as part of the senior management teams for Amgen and Genentech, the two largest biotechnology companies in the world, he contributes invaluable perspective regarding strategy for entrepreneurial biotechs, the needs of potential acquirers, and the global health care industry in general. Mr. Beier served in the White House as the Chief Domestic Policy Advisor to Vice President Al Gore during the Clinton Administration. He has served as an appointee of President Clinton on his Advisory Committee for Trade Policy and Negotiations, on the Institute of Medicine panel on the Future of Health and Human Services, and as an advisor to the President’s Council of Advisors on Science and Technology. Mr. Beier was also formerly a partner in the international law firm Hogan and Hartson and was formerly Counsel to the U.S. House of Representatives Committee on the Judiciary. He has testified before Congress and the Federal Trade Commission, has written numerous law review articles and technical legal works, is regularly invited to author expert op-eds on health care, and has contributed to books on topics ranging from intellectual property, trade, privacy, and justice issues. He currently serves as an appointee of Governor Brown on the California State Government Organization and the Economy Commission, as a fellow of the Center for Global Enterprise, and teaches as an adjunct lecturer at the Haas School of Business at the University of California, Berkeley. Mr. Beier received his J.D. from Albany Law School at Union University and his undergraduate degree at Colgate University. He is admitted to practice law in New York and the District of Columbia.
Ellen Wright Clayton, M.D., J.D., is an internationally respected leader in the field of law and genetics who holds appointments in both the law and medical schools at Vanderbilt University, where she also co-founded and directed the Center for Biomedical Ethics and Society. She has published 2 books and more than 150 scholarly articles and chapters in medical journals, interdisciplinary journals, and law journals on the intersection of law, medicine, and public health. In addition, she has collaborated with faculty and students throughout Vanderbilt and in many institutions around the country and the world on interdisciplinary research projects, and helped to develop policy statements for numerous national and international organizations. She currently chairs the Paediatric Platform of the international Public Population Program in Genomics. An active participant in policy debates, she has advised the National Institutes of Health as well as other federal and international bodies on an array of topics ranging from children’s health to the ethical conduct of research involving human subjects. Professor Clayton has worked on a number of projects for the National Academy of Medicine, of which she is a member of the Executive Committee of its National Advisory Council, chair of the National Academies of Sciences, Engineering, and Medicine’s Board on Population Health and Public Health Practice, and was chair of its committee to define myalgic encephalomyelitis/chronic fatigue syndrome. She is also a member of the National Academies’ Report Review Committee. She is an elected fellow of the American Academy for the Advancement of Science.
Barry S. Coller, M.D., is the Physician in Chief, Vice President for Medical Affairs, David Rockefeller Professor of Medicine, and Head, Allen and Frances Adler Laboratory of Blood and Vascular Biology at The Rockefeller University. He is a leader in investigating platelet physiology, vascular biology, and adhesion phenomena in sickle-cell disease. He produced monoclonal antibodies that inhibit platelet aggregation and adhesion of sickle red blood cells to the blood vessel walls. He produced one of the earliest monoclonal antibodies to platelets and played a leading role in its development into a drug used to prevent thrombosis after coronary artery angioplasty and stent placement in humans. He has also identified mutations in genes that cause human bleeding disorders. Dr. Coller received the Pasarow Award in 2005, the Warren Alpert Foundation Award in 2001, and a National Research Achievement Award from the American Heart Association in 1998. He is a member of the National Academy of Medicine, the National Academy of Sciences, and the American Academy of Arts and Sciences. Dr. Coller is a past president of the American Society of Hematology and was founding president of the Society for Clinical and Translational Science. He currently serves on the National Academies of Sciences, Engineering, and Medicine’s Board on Health Sciences Policy. Dr.
Coller received his B.A. from Columbia University in 1966 and his M.D. from the New York University School of Medicine in 1970. He completed his residency in internal medicine at Bellevue Hospital in New York City and received advanced training in hematology and clinical pathology at the National Institutes of Health. He was at Stony Brook University from 1976 to 1993, and from 1993 to 2001 he served as a professor of medicine and chairman of the Department of Medicine at Mount Sinai School of Medicine. Dr. Coller joined The Rockefeller University in 2001 and currently serves as principal investigator of the university’s Clinical and Translational Science Award and director of The Rockefeller University Center for Clinical and Translational Science.
John H. Evans, Ph.D., is a professor of sociology at the University of California, San Diego. Dr. Evans earned his B.A. from Macalester College and his Ph.D. from Princeton University. He has been a postdoctoral fellow at Yale University and a visiting member of the Institute for Advanced Study in Princeton, New Jersey, and has held visiting professorial fellowships at the University of Edinburgh and the University of Muenster. His research concerns religion, culture, politics, and science. He has published a book about the ethical debates about human genetic engineering in the second half of the 20th century. Another book examines what religious people in the United States think about reproductive genetic technologies. A recent book concerns how societal views can be included in public bioethical debates about issues such as genetic modification. A forthcoming book examines what Americans think a human is, and how that relates to how we should treat each other. He is writing a book about what the relationship is between religion and science for American citizens. In addition to these books, Dr. Evans has written more than 40 articles and book chapters on topics in religion, culture, politics, and science.
Juan Carlos Izpisua Belmonte, Ph.D., is a professor in the Gene Expression Laboratory at the Salk Institute for Biological Studies in La Jolla, California since 1993. From 2005 to 2013 he was also director of the Center for Regenerative Medicine in Barcelona. Dr. Izpisua Belmonte’s research interests are focused on the understanding of stem cell biology, organogenesis, regeneration, and aging. He has published more than 400 articles in internationally peer-reviewed journals and book chapters in these areas. The ultimate goal of his research is to translate it toward the development of cell- and gene-based therapies as well as new molecules for the treatment of human disease. Dr. Izpisua Belmonte graduated from the University of Valencia, Spain, with a bachelor’s degree in pharmacy and science and a master’s degree in pharmacology, and he received his Ph.D. from the University of Bologna, Italy, and the University of Valencia, Spain, in 1987. He
completed his postdoctoral work at the European Molecular Biology Lab in Heidelberg, Germany, and at the University of California, Los Angeles.
Rudolf Jaenisch, M.D., is a founding member of the Whitehead Institute for Biomedical Research and professor of biology at the Massachusetts Institute of Technology. Dr. Jaenisch studies the epigenetic regulation of gene expression with the goal of efficiently changing one differentiated cell type into another. This has led to groundbreaking work with mammalian embryonic stem cells and adult cells that have been reprogrammed to an embryonic stem cell–like state, called induced pluripotent stem (iPS) cells. Dr. Jaenisch continues to push iPS cell methodology forward and has demonstrated iPS cells’ therapeutic potential in models of sickle-cell anemia and Parkinson’s disease. For his work, Dr. Jaenisch has been honored with the first Peter Gruber Foundation Award in Genetics, Brupracher Foundation Cancer Award, Cozzarelli Prize from the Proceedings of the National Academy of Sciences of the United States of America, Robert Koch Prize for Excellence in Scientific Achievement, Meira and Shaul G. Massry Prize, Ernst Schering Prize, Vilcek Prize, and Wolf Prize in Medicine, and is a recipient of the United States National Medal of Science. Dr. Jaenisch is a member of the National Academy of Sciences, a member of the National Academy of Medicine, and a fellow of the American Academy of Arts and Sciences.
Jeffrey Kahn, Ph.D., M.P.H., is the Andreas C. Dracopoulos Director of the Johns Hopkins Berman Institute of Bioethics. He is also Robert Henry Levi and Ryda Hecht Levi Professor of Bioethics and Public Policy, and Professor in the Department of Health Policy and Management in the Johns Hopkins Bloomberg School of Public Health. His research interests include the ethics of research, ethics and public health, and ethics and emerging biomedical technologies. He speaks widely both in the United States and abroad and has published 4 books and more than 125 articles in the bioethics and medical literature. He is an elected member of the National Academy of Medicine and a fellow of the Hastings Center, and he has chaired or served on committees and panels for the National Institutes of Health, the Centers for Disease Control and Prevention, and the Institute of Medicine/National Academy of Medicine. He is currently chair of the National Academies of Sciences, Engineering, and Medicine’s Board on Health Sciences Policy. His education includes a B.A. from the University of California, Los Angeles, a Ph.D. from Georgetown University, and an M.P.H. from the Johns Hopkins Bloomberg School of Public Health.
Ephrat Levy-Lahad, M.D., is a professor of internal medicine and medical genetics at the Hebrew University of Jerusalem and director of the Medical Genetics Institute at Shaare Zedek Medical Center in Jerusalem, Israel. She
received her medical degree from the Hebrew University-Hadassah Medical School in Jerusalem, and is board certified in internal medicine (Israel) and in clinical genetics and clinical molecular genetics (Israel and the United States). Dr. Levy-Lahad’s clinical laboratory includes cancer genetics diagnostics and a large preimplantation diagnosis service. Her research laboratory focuses on the genetics of breast cancer, in particular the BRCA1 and BRCA2 genes, and on genetic and environmental factors that affect the risk associated with these mutations. She also studies the application of genetic testing to population screening and large-scale prevention efforts. Another focus of her research is elucidating the genetic basis of rare diseases, including discoveries of novel genes for neurological phenotypes and for defects in ovarian development. Dr. Levy-Lahad is highly involved in bioethical aspects of genetic research, and is currently co-chair of the Israel National Bioethics Council. She is a member of Israel’s National Council for Gynecology, Perinatal Medicine, and Genetics and the National Council for Digital Health Innovation. Internationally, she was a member of the United Nations Educational, Scientific and Cultural Organization’s International Bioethics Committee (2006-2009) and the International Society for Stem Cell Research’s Task Force on the Clinical Translation of Stem Cells.
Robin Lovell-Badge, Ph.D., is a senior group leader at The Francis Crick Institute. Dr. Lovell-Badge has had longstanding interests in the biology of stem cells, how genes work in the context of embryo development, and how decisions of cell fate are made. Major themes of his current work include sex determination, development of the nervous system and pituitary, and the biology of stem cells within the early embryo. He is also very active in both public engagement and policy work, notably around stem cells, genetics, human embryo and animal research, and in ways science is regulated and disseminated. He is a co-opted member of the Human Fertilisation and Embryology Authority’s Scientific and Clinical Advances Advisory Committee and a member of its panel looking at the science and safety of ways to avoid mitochondrial diseases. He was a member of the U.K. Academy of Medical Sciences’ committees on Interspecies-Embryos, Animals Containing Human Material, and a joint U.K. academies committee on Human Enhancement and the Future of Work. He is also a member of the steering committee of the Hinxton Group, the Royal Society’s Public Engagement Committee, and the U.K. Science Media Centre’s Advisory Board. He was elected a member of EMBO in 1993, a fellow of the Academy of Medical Sciences in 1999, and a fellow of The Royal Society in 2001. He has received the Louis Jeantet Prize for Medicine in 1995, the Amory Prize, awarded by the American Academy of Arts and Sciences, in 1996, the Feldberg Foundation Prize in 2008, and the Waddington Medal of the British Society for Developmental Biology in 2010. He was also a distinguished
visiting professor at the University of Hong Kong from 2009 to 2015 and the president of the Institute of Animal Technologists. Dr. Lovell-Badge obtained his B.Sc. in zoology at the University College London in 1975 and his Ph.D. in embryology at the University College London in 1978.
Gary Marchant, J.D., Ph.D., is Regents’ Professor and Lincoln Professor of Emerging Technologies, Law and Ethics at the Sandra Day O’Connor College of Law at Arizona State University (ASU). He is also a professor of life sciences at ASU and executive director of the ASU Center for the Study of Law, Science and Technology. Professor Marchant has a Ph.D. in genetics from the University of British Columbia, a masters of public policy degree from the Kennedy School of Government, and a law degree from Harvard University. Prior to joining the ASU faculty in 1999, he was a partner in a Washington, DC, law firm where his practice focused on environmental and administrative law. Professor Marchant teaches and researches in the subject areas of environmental law, risk assessment and risk management, genetics and the law, biotechnology law, food and drug law, legal aspects of nanotechnology, and law, science, and technology.
Jennifer Merchant, Ph.D., is a professor of Anglo-American legal and political institutions at the Université de Paris II (Panthéon-Assas). She is a leading researcher in bioethical issues of comparative public policy with expertise in comparative North American and European policy, politics, and regulation of medical technologies involving human reproduction. She is also an expert in French law and politics on embryo research and assisted reproductive technology. Her academic interests include comparative public policy, reproduction, bioethics, civil society, science, and government. Dr. Merchant is a member of the French National University Institute, the Centre for the Study and Research of Administrative and Political Sciences, the Ethics Committee of the French National Institute of Health and Medical Research, and the International Network on Feminist Approaches to Bioethics (FAB) Association as well as FAB Country Representative for France. She has been the co-editor-in-chief of the Revue Tocqueville/Tocqueville Review since 2001 and a member of the Global Ethics Observatory and the United Nations Educational, Scientific and Cultural Organization since 2005.
Luigi Naldini, M.D., Ph.D., is professor of cell and tissue biology and of gene and cell therapy at the San Raffaele University School of Medicine and scientific director of the San Raffaele Telethon Institute for Gene Therapy, Milan, Italy. Dr. Naldini has pioneered the development and applications of lentiviral vectors for gene transfer, which have become one of the most widely used tool in biomedical research and, upon recently entering clini-
cal testing, are providing a long sought hope of cure for several currently untreatable and otherwise deadly human diseases. Since then he has continued to investigate new strategies to overcome the major hurdles to safe and effective gene transfer, translate them into new therapeutic strategies for genetic disease and cancer, and allowed novel insights into hematopoietic stem cell function, induction of immunological tolerance, and tumor angiogenesis. His recent work also contributed to advancing the use of engineered nucleases for targeted genome editing in cell and gene therapy. Dr. Naldini is a member of the European Molecular Biology Organization, has been president of the European Society of Gene and Cell Therapy (ESGCT), and was awarded an European Research Council Advanced Investigator Grant in 2009, the Outstanding Achievement Award from the American Society of Gene and Cell Therapy in 2014 and from ESGCT in 2015, an Honorary doctorate from the Vrije University, Brussel, in 2015, and the Jimenez Diaz Prize in 2016. He received his M.D. from the University of Torino and his Ph.D. in cell and tissue biology from the University of Rome La Sapienza.
Duanqing Pei, Ph.D., is professor and director general of Guangzhou Institutes of Biomedicine and Health, Chinese Academy of Sciences. Dr. Pei joined the medical faculty at Tsinghua University in Beijing, China, in 2002 and moved to the newly formed Guangzhou Institutes of Biomedicine and Health in 2004. Prior to this appointment, he served as a faculty member at the University of Minnesota School of Medicine. Dr. Pei studied the transcription regulation of hepatitis B virus (HBV) for his Ph.D. thesis and worked on extracellular matrix remodeling as a postdoctoral fellow and faculty member. Upon returning to China, he first started to work on stem cell pluripotency and then on reprogramming. The Pei lab in Tsinghua has published on the structure and function of Oct4, Sox2, FoxD3, Essrb, and Nanog, and their interdependent relationship toward pluripotency. The Pei lab was the first in China to create mouse induced pluripotent stem (iPS) cells using a nonselective system, and then improved the iPS process systematically. The Pei lab subsequently disseminated the iPS technology in China by providing resources and training workshops. Recent publications from the Pei lab includes the discovery of vitamin C as a potent booster for iPS cell generation and that a mesenchymal to epithelial transition initiates the reprogramming process of mouse fibroblasts. Dr. Pei’s lab continues to explore new ways to improve iPS technology, dissect the reprogramming mechanisms driven by Oct4/Sox2/Klf4 or fewer factors, develop alternative reprogramming methods, employ iPS cells to model human diseases in vitro, and use gene-editing tools to correct mutations in stem cells for regenerative medicine. Dr. Pei obtained his Ph.D. from the University of Pennsylvania in 1991 and trained as a postdoctoral fellow at the University of Michigan.
Matthew Porteus, M.D., Ph.D., is associate professor of pediatrics, Divisions of Stem Cell Transplantation and Regenerative Medicine, Hematology/Oncology, and Human Gene Therapy at Stanford School of Medicine. He completed his combined M.D.-Ph.D. at Stanford Medical School, with his Ph.D. focusing on understanding the molecular basis of mammalian forebrain development with his Ph.D. thesis titled “Isolation and Characterization of TES-1/DLX-2: A Novel Homeobox Gene Expressed During Mammalian Forebrain Development.” After completion of his dual-degree program, he was an intern and resident in pediatrics at Boston Children’s Hospital and then completed his pediatric hematology/oncology fellowship in the combined Boston Children’s Hospital/Dana Farber Cancer Institute program. For his fellowship and postdoctoral research he worked with Dr. David Baltimore at the Massachusetts Institute of Technology and the California Institute of Technology where he began his studies in developing homologous recombination as a strategy to correct disease-causing mutations in stem cells as definitive and curative therapy for children with genetic diseases of the blood, particularly sickle-cell disease. Following his training with Dr. Baltimore, he took an independent faculty position at University of Texas Southwestern in the Departments of Pediatrics and Biochemistry before again returning to Stanford University in 2010 as an associate professor. During this time his work has been the first to demonstrate that gene correction could be achieved in human cells at frequencies that were high enough to potentially cure patients and is considered one of the pioneers and founders of the field of genome editing—a field that now encompasses thousands of labs and several new companies throughout the world. He has extensive experience with the major engineered nuclease platforms including zinc finger nucleases, transcription activator-like effector nucleases, and CRISPR/Cas9 nucleases. He has used genome-editing strategies in a variety of different stem cells including hematopoietic stem and progenitor cells, neural stem cells, spermatogonial stem cells, human embryonic stem cells, and induced pluripotent cells. His research program continues to focus on developing genome editing by homologous recombination as curative therapy for patients with both genetic and nongenetic diseases. Clinically, Dr. Porteus attends at the Lucille Packard Children’s Hospital where he takes care of pediatric patients undergoing hematopoietic stem cell transplantation. Administratively, Dr. Porteus is the associate director of the Stanford Medical Scientist-Training Program where he oversees the admission and progress of students obtaining both M.D. and Ph.D. degrees at Stanford University.
Janet Rossant, Ph.D., is a senior scientist in the Developmental and Stem Cell Biology Program at The Hospital for Sick Children and is a professor in the Department of Molecular Genetics, and the Department of Obstetrics
and Gynaecology at the University of Toronto. Her research focuses on understanding the genetic control of normal and abnormal development in the early mouse embryo using both cellular and genetic manipulation techniques. Her interests in the early embryo have led to the discovery of a novel placental stem cell type, the trophoblast stem cell. Dr. Rossant is also the president and scientific director of the Gairdner Foundation. She is actively involved in the international developmental and stem cell biology communities and has contributed to the scientific and ethical discussion on public issues related to stem cell research. She chaired the working group of the Canadian Institutes of Health Research (CIHR) on stem cell research, which came up with guidelines for CIHR-funded research in this area. Dr. Rossant trained at Oxford University and Cambridge University in the United Kingdom and has been in Canada since 1977, first at Brock University and then at the Samuel Lunenfeld Research Institute, Mount Sinai Hospital, Toronto, from 1985 to 2005.
Dietram A. Scheufele, Ph.D., is the John E. Ross Professor in Science Communication and Vilas Distinguished Achievement Professor at the University of Wisconsin–Madison and in the Morgridge Institute for Research. He is also an Honorary Professor of Communication at the Technische Universität Dresden, Germany. Dr. Scheufele has co-chaired the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Public Interfaces of the Life Sciences and the National Conference of Lawyers and Scientists, a joint committee of the American Association for the Advancement of Science and the American Bar Association. He is a fellow of the American Association for the Advancement of Science, the International Communication Association, and the Wisconsin Academy of Sciences, Arts, and Letters, and a member of the German National Academy of Science and Engineering. He currently serves on the National Academies of Sciences, Engineering, and Medicine’s Division on Earth and Life Studies Advisory Committee. In the past, Dr. Scheufele has been a tenured faculty member at Cornell University, a Shorenstein fellow at Harvard University, and a visiting scholar at the Annenberg Public Policy Center of the University of Pennsylvania. His consulting experience includes work for the Public Broadcasting System, World Health Organization, and World Bank.
Ismail Serageldin, Ph.D., is the founding director of the Bibliotheca Alexandrina (BA), the new Library of Alexandria, inaugurated in 2002. He also chairs the Boards of Directors for each of the BA’s affiliated research institutes and museums. He is advisor to the Egyptian Prime Minister in matters concerning culture, science and museums. He serves as chair or member of a number of advisory committees for academic, research, scientific, and international institutions and civil society efforts, including the
Advisory Committee of the World Social Science Report for 2013, as well as the United Nations Educational, Scientific and Cultural Organization–supported World Water Scenarios (2013), and chairs the Executive Council of the World Digital Library (2010), the Executive Council of the Encyclopedia of Life (2010), and the Internet Corporation for Assigned Names and Numbers Panel for the Review of the Internet Future (2013). He also co-chaired the African Union’s High-Level Panel on Modern Biotechnology (2006) and again on Science, Technology and Innovation in 2012-2013. He has previously held positions including vice president of the World Bank (1992-2000), chairman of the Consultative Group on International Agricultural Research (1994-2000), and founder and former chairman of the Global Water Partnership (1996-2000) and the Consultative Group to Assist the Poorest, a microfinance program (1995-2000). He was chair of Savoirs Contre Pauvreté (Knowledge Against Poverty), at Collège de France, Paris, and distinguished professor at Wageningen University in the Netherlands. He is a member of many academies, including the U.S. National Academy of Sciences (Public Welfare Medalist), the American Philosophical Society, the American Academy of Arts and Sciences, the World Academy of Sciences, the World Academy of Arts and Sciences, the European Academy of Sciences and Arts, the African Academy of Sciences, Institut d’Egypte (Egyptian Academy of Science), the Royal Belgian Academy, the Bangladesh Academy of Sciences, and the Indian National Academy of Agricultural Sciences. Dr. Serageldin has published more than 100 books and more than 500 papers on a variety of topics, including biotechnology, rural development, sustainability, and the value of science to society. He has hosted a cultural program on television in Egypt (more than 130 episodes) and developed a television Science Series in Arabic and English. He holds a bachelor of science degree in engineering from Cairo University, a master’s degree and a Ph.D. from Harvard University, and has received 34 honorary doctorates.
Sharon Terry, M.A., is president and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance engages individuals, families, and communities to transform health. Ms. Terry is also the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), which affects Ms. Terry’s two adult children. As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. She developed a diagnostic test and conducts clinical trials. She is the author of 140 peer-reviewed papers, of which 30 are PXE clinical studies. Ms. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. In her focus at the forefront of consumer participation in genetics
research, services, and policy, she serves in a leadership role on many of the major international and national organizations, including the Accelerating Medicines Partnership, the National Academies of Sciences, Engineering, and Medicine’s Science and Policy Board, the National Academies’ Roundtable on Translating Genomic-Based Research for Health, the PubMed Central National Advisory Committee, the PhenX scientific advisory board, the Global Alliance for Genomics and Health, the International Rare Disease Research Consortium Executive Committee, and as Founding President of EspeRare Foundation of Geneva, Switzerland. She is on the editorial boards of several journals and is an editor of Genome. She led the coalition that was instrumental in the passage of the Genetic Information Nondiscrimination Act. She received an honorary doctorate from Iona College for her work in community engagement in 2006; 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 Leadership in Public Advocacy in 2011. In 2012, she became an honorary professor of Hebei United University in Tangshan, China, and also received the Facing Our Risk of Cancer Empowered (FORCE) Spirit of Empowerment Advocacy Award. She was named one of the U.S. Food and Drug Administration’s “30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act” in 2013. In 2012 and 2013, Ms. Terry won $400,000 in first prizes in three large competitions for the Platform for Engaging Everyone Responsibly (PEER). PEER was awarded a $1 million contract from the Patient-Centered Outcomes Research Institute in 2014.
Jonathan Weissman, Ph.D., is a professor of cellular and molecular pharmacology at the University of California, San Francisco, and a Howard Hughes Medical Institute investigator. His research explores how cells ensure that proteins fold into their correct shape, as well as the role of protein misfolding in disease and normal physiology. He is also developing experimental and analytical approaches for exploring the organizational principles of biological systems and globally monitoring protein translation through ribosome profiling. A broad goal of his work is to bridge large-scale approaches and in-depth mechanistic investigations to reveal the information encoded within genomes.
Keith Yamamoto, Ph.D., is University of California, San Francisco, vice chancellor for science policy and strategy. He also serves as vice dean for research for the School of Medicine, and professor of cellular and molecular pharmacology. Dr. Yamamoto’s research focuses on signaling and transcriptional regulation by nuclear receptors, which mediate the actions
of essential hormones and cellular signals; he uses mechanistic and systems approaches to pursue these problems in pure molecules, cells, and whole organisms. He has led or served on numerous national committees focused on public and scientific policy, public understanding and support of biological research, and science education; he chairs the Coalition for the Life Sciences, and sits on the National Academy of Medicine Council and the National Academies of Sciences, Engineering, and Medicine’s Division on Earth and Life Studies Advisory Committee. He has chaired or served on many committees that oversee training and the biomedical workforce, research funding, and the process of peer review and the policies that govern it at the National Institutes of Health. He is a member of the advisory board for Lawrence Berkeley National Laboratory and the board of directors of Research!America. He was elected to the National Academy of Sciences, the National Academy of Medicine, the American Academy of Arts and Sciences, and the American Academy of Microbiology, and is a fellow of the American Association for the Advancement of Science.
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