Appendix D Participant Biographies
Michael T. Clegg is Dean of the College of Natural and Agricultural Sciences at the University of California, Riverside. He is the leading student of the evolution of complex genetic systems. He is recognized internationally for his contributions to understanding the genetic and ecological basis for adaptive evolutionary changes within populations and at higher taxonomic levels. Clegg's current research interests include: population genetics of plants; plant molecular evolution; plant phylogeny; and genetic conservation in agriculture. He received his Ph.D. degree in genetics from the University of California at Davis. Clegg is member of the National Academy of Sciences and chairman of the Board on Biology.
Ray White is Chair of the Department of Oncological Sciences and Director of the Huntsman Cancer Institute at the University of Utah. He was a pioneer in developing the methods used to identify disease-causing genes. He discovered the mechanisms and, ultimately, several specific genes involved in inherited forms of cancer. He received his Ph.D. in microbiology from the Massachusetts Institute of Technology. He is a member of the National Academy of Sciences and the NRC's Board on Biology.
eral years. Ms. Alpert recently completed a paper for the National Bioethics Advisory Commission on privacy issues in the analysis of stored tissue samples. She is a Ph.D. candidate at the Institute of Public Policy at George Mason University.
Frederick Anderson is a Partner with Cadwalader, Wickersham & Taft and former Dean of the law school at American University. His practice involves science, the environment, and natural resources including risk assessment and management, hazardous air pollutants. He has degrees from Harvard University and Oxford. He is a member of the D.C. and U.S. Supreme Court bars. Mr. Anderson is Chairman of the Board of the Center for International Environmental Law and was president of the Environmental Law Institute. He is the author of: Environmental Protection: Law and Policy; NEPA in the Courts; Environmental Improvement through Economic Incentives and numerous scholarly articles. He is a member of the NRC's Commission on Life Sciences.
Sherri Bale is Chief, Genetic Studies Section/Lab of Skin Biology, National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health. She has been involved in research into the genetic basis of hereditary disorders, particularly those affecting skin and musculoskeletal systems, throughout her career. She received her Ph.D. in Human Genetics from the University of Pittsburgh graduate School of Public Health. She took her Fellowship training in Medical Genetics at the National Institutes of Health and is board certified in Medical Genetics.
Paul Berg is the Director of the Beckman Center for Molecular and Genetic Medicine at Stanford University School of Medicine. His research interests include the molecular biology of mammalian gene expression and regulation. He received the Nobel Prize for Chemistry in 1980 and the National Medal of Science in 1983. He received his Ph.D. degree in biochemistry from Western Reserve University School of Medicine. He is a member of the National Academy of Sciences, the Institute of Medicine, and the NRC's Commission on Life Sciences.
Paul Billings is the Chief Medical Officer and Deputy Network Director of the Heart of Texas Veterans Integrated Service Network. He received his M.D. and Ph.D. degrees in immunology from Harvard University. His research interests indulge social and political impacts of biotechnology. A board certified internist and medical geneticist, he is a Director of several not-for-profit organizations including the Council for Responsible Genetics.
Eugene Carstea is the Director of the Saccomanno Research Institute at St. Mary's Hospital & Medical Center. The institute maintains the Saccomanno
Uranium Miner Archive. This collection, assembled over the past 45 years, harbors tissue samples and documentation from over 17,000 uranium miners of Western Colorado and Eastern Utah. Dr. Carstea's research interests include familial susceptibility associated with the onset of lung cancer and the development of molecular markers important for its early identification. In 1997, he led a team of investigators at the National Institute of Neurological Disorders and Stroke in Bethesda, Maryland in identifying the gene responsible for a neurodegenerative disorder known as Niemann-Pick disease type C (NPC).
Carol Dahl is currently Assistant to the Director of the National Cancer Institute (NCI) in the area of strategic technologies. In this capacity she advises the Director of the NCI on technology development opportunities in support of the National Cancer Program. Prior to joining the NCI, Dr. Dahl was Program Director of the Sequencing Technology Branch at the National Center for Human Genome Research and served on the faculty of the University of Pittsburgh and the Pittsburgh Cancer Institute. Dr. Dahl received her Ph.D. from the University of Wisconsin-Madison.
Pieter de Jong is currently Acting Chairman for the Department of Cancer Genetics at Roswell Park Cancer Institute, Buffalo, NY and Associate Research Professor for the State University of New York at Buffalo. His research interests are in the area of the Human Genome initiative and its applications related to Cancer Genetics. His main contributions to the Human Genome project have focused on the improvement of large-fragment DNA cloning procedures and the preparation of the central DNA resources used for large-scale genome sequence analysis. Prior to joining Roswell Park Cancer Institute in 1993, Dr. de Jong directed the National Laboratory Gene Library project at Lawrence Livermore National Laboratory at Livermore, California. Dr. de Jong received his Ph.D. in 1982 at Utrecht State University, Utrecht, The Netherlands.
William Dommel has served the Office for Protection from Research Risks from 1979 to 1998, with positions that include Director, Division of Human Subject Protections, followed by Director of Regulatory Affairs. From 1996 to 1997, Dr. Dommel served as acting Executive Director of the National Bioethics Advisory Commission, after which he returned to the OPRR to serve as its Director of Education. In January of 1998 Dr. Dommel finished 20 years within the Office of the Director at the NIH to become an independent consultant, concentrating on issues related to biomedical ethics. He also serves as Executive Director of the National Reading Panel, within the NICHD of the NIH.
Daniel Drell is biologist at the U.S. Department of Energy's Human Genome Program in the Office of Health and Environmental Research. His major responsibilities have included the DOE Microbial Genome Program, Bioremediation
and Its Societal Implications and Concerns (BASIC) of Natural and Accelerated Bioremediation Research (NABIR) Program, and the Bioinformatics of Human Genome Program. Dr. Drell received his undergraduate degree Magna cum Laude from the department of biology at Harvard College. He continued his studies at the University of Alberta, Edmonton where he received his Ph.D. degree from the department of immunology.
David Foster is with Genzyme Corporation, Cambridge, MA.
Barbara Fuller is a senior policy analyst for the National Human Genome Research Institute. Her major responsibilities include initiatives regarding genetic information and health insurance discrimination, employment discrimination, and the privacy of genetic information. She received her B.A. and J.D. from the University of Maryland. In addition to her legal background, she is a Registered Record Administrator and has worked in a variety of health care settings, including hospitals and HMOs.
David John Galas is president, CEO, and chief scientific officer at Darwin Molecular Corporation in Bothell, Washington. His research interests include molecular genetics of transposition, and the mechanisms and consequences of these recombination processes; and molecular interactions of DNA with proteins, and their consequences in gene control and recombination. Galas secured all of his degrees in physics from the University of California; studying at Berkeley for his undergraduate degree, and at Livermore for his masters and Ph.D. degrees. He currently serves on the NRC's Board on Biology.
David Goeddel is President, CEO, and a founder of Tularik Inc., in San Francisco. Tularik Inc. is engaged in the discovery and development of a broad range of novel drugs that act through the regulation of gene expression. The company is currently focusing on seven disease areas: viral diseases, hypercholesterolemia, immune disorders, inflammation, bacterial diseases, obesity, and cancer. Prior to Tularik Inc. he was a Genentech Fellow and the Director of Molecular Biology at Genentech Inc. He received his Ph.D. at the University of Colorado. He is a member of the National Academy of Sciences, the American Academy of Arts and Sciences and currently serves on the NRC's Board on Biology.
Judith H. Greenberg has been Director, Division of Genetics and Developmental Biology, National Institute of General Medical Sciences (NIGMS) since 1988. In this position she is responsible for the funding of grants that support research on the fundamental mechanisms of inheritance, development, and cell function. She joined NIGMS as a program administrator in 1981. Prior to that she was a senior staff fellow in the National Institute of Dental Research, NIH. She received her Ph.D. in 1972 from Bryn Mawr College.
Barbara Handelin is President of her consulting firm, Handelin Associates. She received her training at the Oregon Health Sciences University and MIT. Afterwards, Dr. Handelin was an early practitioner in the field of molecular genetic diagnostics and its application in general medical practice. She was Director of the molecular genetics laboratory at Integrated Genetics (now Genzyme Genetics) for 7 years (1987 to 1994), where she helped create appropriate protocols—both clinical and laboratory—for genetic testing for Huntington's disease, cystic fibrosis, spinal muscular atrophy, and other diseases. Dr. Handelin is currently working on a project funded by the Department of Energy's Ethical, Legal and Social Implications program which is directed at developing general principles and frameworks for review of research protocols involving use of human subjects in genetics studies.
Kathy Hudson is with the National Human Genome Research Institute, Bethesda, Maryland.
Edward Hild is a Legislative Assistant to Senator Pete V. Domenici.
Diane Isonaka has spent the last fifteen years working in the global genetics community. Prior to her position as Director of Development and Technology with Darwin Molecular Corporation, she was one of the founders and then served as the Americas Director and International Secretary for the Human Genome Organisation (HUGO); was the Manager of the Howard Hughes Medical Institute's Genome Program where, together with the NIH and the DOE, she worked to develop the U.S. Human Genome Project. She was also the Executive Director of the Utah Resource for Genetic & Epidemiologic Research, one of the first U.S. programs specifically initiated to address the complex social, ethical, and legal issues surrounding genetics research using human populations. Dr. Isonaka obtained her degree from the University of Southern California.
Cynthia Kenyon is the Boyer Professor of biochemistry and biophysics at the University of California at San Francisco. Her research interest is in developmental genetics and genetic influence on the process of aging. She received her Ph.D. degree from the Massachusetts Institute of Technology. She is a member of the American Academy of Arts and Sciences and the NRC's Commission on Life Sciences. She has also published childrens' stories that help illustrate the law of probability.
Eleanor Kerr is Senior Director, Government Relations, for SmithKline Beecham. She has been with SB for 5 years, and represents SB before Congress and the Executive Branch on a variety of health care matters, including pharmaceutical and vaccine issues, research and development issues—encompassing genomics and bioethics matters, and health care services-related issues. Prior to
coming to SB, Ms. Kerr was an appointee in the Bush Administration, serving as chief policy coordinator for HHS Secretary Lou Sullivan on all medicaid and FDA matters. She has also worked in the U.S. Senate twice, for the Senator Labor and Human Resources Committee, as health advisor to then-Senator Dan Quayle, and as a legislative assistant for women's issues to former senator Bob Packwood, and as a lobbyist for the Health Insurance Association of America.
Margaret Kidwell is Regents' Professor of Ecology and Evolutionary Biology at the University of Arizona. Her research interests include the evolution and population genetics of transposable genetic elements and their impact on genome evolution. Kidwell completed her undergraduate training in agriculture at Nottingham, UK, followed by a master's degree at Iowa State University and a Ph.D. in biology at Brown University. She is a member of the National Academy of Sciences and currently serves on the Commission on Life Sciences and Board on Biology.
Jack Killen is the Director of the Division of AIDS, where he oversees National Institute of Allergy and Infectious Disease's support of basic biomedical, therapeutic and vaccine research on HIV. He received his M.D. from Tufts University in 1975, and completed postgraduate training in internal medicine and medical oncology at Georgetown University in 1980. He is board certified in both specialties.
Michael J. Knapp is vice president for program development at the National Center for Genome Resources where he is responsible for creating the Genetics and Public Issues program, overseeing the company's external communications, managing government relations, and developing and implementing fund-raising plans. He received his undergraduate degree in economics and government from the College of William and Mary in Virginia.
David Korn is Senior Vice President for biomedical and health sciences research at the Association of American Medical Colleges and Vice President, Dean and Professor of Pathology, Emeritus, of Stanford University School of Medicine.
Melody H. Lin serves as Deputy Director of the Office for Protection from Research Risks (OPRR) at the National Institutes of Health. OPRR is legislatively mandated to oversee implementation of the HHS Regulations for the Protection of Human Subjects and the PHS Policy on Humane Care and Use of Laboratory Animals. OPRR is engaged in a wide range of ethical and regulatory issues relative to the involvement of human subjects in biomedical research. Dr. Lin is responsible for the management of all policy, personnel and budgetary matters of all divisions of OPRR. Dr. Lin has held previous positions at OPRR as Director of the Division of Human Subject Protection (DHSP), Chief, Compli-
ance Oversight Branch; and AIDS Assurance Coordinator/Health Scientists Administrator.
Pearl O'Rourke is in the Office of Science Policy and Planning, National Institutes of Health.
Edward Penhoet is President and CEO of Chiron Corporation. Chiron Corporation is a science-driven healthcare company positioned to combine diagnostic, vaccine and therapeutic strategies against many diseases, including AIDS, hepatitis C, and cancers. Prior to joining Chiron he was a professor of biochemistry at the University of California at Berkeley. He received his Ph.D. in biochemistry at the University of Washington. He is a member of the NRC's Commission on Life Sciences.
Anne Phelps is currently Health Policy Advisor on the Senate Labor and Human Resources Subcommittee on Public Health and Safety, Chairman Bill First (R-TN). She handles issues for the Subcommittee regarding public health and biomedical research, medical records confidentiality, genetic discrimination, and health care quality/insurance issues. She has served as health policy fellow to the Senate Labor and Human Resources Committee under the chairmanship of Senator Nancy Kassebaum (R-KS). Prior to this, she worked at the NIH, with her most recent position prior to coming to Capitol Hill in the NIH Director's Office of Legislative Policy and Analysis. She received her Master's degree in Public Policy from the George Washington University in 1991.
Susan Rose is responsible for human subjects activities and policies at the U.S. Department of Energy. She has been involved in these issues since the early days of Human Subject Regulations (1976) and also managed the Radon Research Program for the Department. Dr. Rose received her Ph.D. from the Catholic University of America in Medical Technology/Immunohematology.
Lana Skirboll is the National Institutes of Health (NIH) Associate Director for Science Policy. She is a neuroscientist and the author of more than 75 scientific publications. She received her Ph.D. in the Department of Pharmacology, Georgetown University Medical School, and conducted her post-doctoral training in the Departments of Psychiatry and Pharmacology at the Yale University School of Medicine. She has also worked in the Karolinska Institute in Stockholm, Sweden, in the intramural research program of the National Institute of Mental Health, and in the Alcohol, Drug Abuse, and Mental Health Administration.
Irene Stith-Coleman has served as Head of the Biomedical Policy Section of the Science, Technology and Medicine Division at the Congressional Research Ser-
vice (CRS) since 1990. Dr. Stith-Coleman received her Ph.D. from Meharry Medical College in Nashville, Tennessee. Dr. Stith-Coleman specializes in issues related to the Human Genome Project, reproductive and contraceptive technology, biomedical ethics, and women's health research.
Shirley M. Tilghman is currently Howard A. Prior Professor of the life sciences and investigator at the Howard Hughes Medical Institute at Princeton University. Working in Phil Leder's laboratory, Tilghman was the first to clone the beta-globin gene of mice and show that the gene had an intron. She identified the H19 gene in mice, an early example of parental imprinting, and showed how this gene and its regulatory elements initiate and maintain parental imprinting. Other research interests include using genetics to understand the role of the genes involved in the development of melanocytes, the pigment-producing cells in the mouse. She received her Ph.D. degree from Temple University in biochemistry. Tilghman is National Academy of Sciences foreign associate member and Institute of Medicine member, and currently serves on the NRC's Board on Biology.
Suzzane Tomlinson is the bioethics counsel and the outreach manager for the Biotechnology Industry Organization (BIO). She works with BIO member companies to prepare documents on bioethics issues impacting the industry, such as the privacy of medical information and issues of genetic discrimination. Previously, she worked at Genzyme Corporation, a biotechnology company, where she monitored the impact of health care reform on biotech drugs and devices. Prior to this Tomlinson interned in the Office of the General Counsel at the Department of Health and Human Services, the Council on Competitiveness in the Office of Vice President Quayle, and at the George Washington University's Center for Health Policy Research. Dr. Tomlinson earned her juris doctor degree from the George Washington University in Washington, D.C.
Leo Whelan is a member of the Mayo Foundation's Legal Department and advises its IRB and its researchers. He received his J.D. from the University of Minnesota.
Vicky Whittemore is a neurobiologist who is now on staff at the National Tuberous Sclerosis Association where she is the Vice President for Medical & Scientific Affairs. Her major responsibilities include serving as the Director of the NTSA Center Without Walls, an international research consortium, and oversight of all of the organizations' medical and research programs. She received her undergraduate degree in zoology from Iowa State University and her Ph.D. in anatomy from the University of Minnesota Medical School. She then spent two years as a postdoctoral fellow in the Department of Psychobiology at the University of California, Irvine working with Dr. Carl Cotman, and then was a Fogarty
Fellow at the Karolinska Institute working with Professor Thomas Hokfelt in the Department of Histology. She was a tenured Associate Professor at The Miami Project to Cure Paralysis at the University of Miami School of Medicine in the Departments of Neurosurgery and Cell Biology and Anatomy before joining the staff at NTSA in 1994.