APPENDIX A
Committee on Human Genome Diversity: Biographical Information

WILLIAM J. SCHULL (Chair) is currently the Director of the Human Genetics Center at the School of Public Health of the University of Texas Health Science Center in Houston, and Ashbel Smith Professor of Academic Medicine. Prior to joining the faculty of the University of Texas in 1972, he was a member of the Department of Human Genetics at the University of Michigan. He has been a visiting professor at such institutions as the University of Chicago, the University of Chile, the University of Heidelberg, and the John Curtin School of Medical Research at the Australian National University in Canberra. He has also served on numerous editorial boards, and committees of the US Public Health Service, National Academy of Sciences-National Research Council, National Institutes of Health, and the Department of Energy and its affiliated national laboratories. A substantial portion of his scientific career has been spent in Japan studying the effects of exposure to ionizing radiation on the survivors of the atomic bombing of Hiroshima and Nagasaki. As a result of this involvement he was awarded the Order of the Sacred Treasure by Emperor Akihito in 1992. His interests in the effects on health of exposure to ionizing radiation and the role of genetic factors in the etiology of common chronic diseases has resulted in over 400 articles in professional journals, including 14 books that he has either edited or written.

GEORGE J. ANNAS is the Utley Professor and Chair, Health Law Department, Boston University Schools of Medicine, Law, and Public Health. He is also the founder of the Law, Medicine and Ethics Program at Boston University. He has authored or edited a dozen books on health law and bioethics, including The Rights of Patients, Judging Medicine, and Standard of Care. He currently



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Evaluating Human Genetic Diversity APPENDIX A Committee on Human Genome Diversity: Biographical Information WILLIAM J. SCHULL (Chair) is currently the Director of the Human Genetics Center at the School of Public Health of the University of Texas Health Science Center in Houston, and Ashbel Smith Professor of Academic Medicine. Prior to joining the faculty of the University of Texas in 1972, he was a member of the Department of Human Genetics at the University of Michigan. He has been a visiting professor at such institutions as the University of Chicago, the University of Chile, the University of Heidelberg, and the John Curtin School of Medical Research at the Australian National University in Canberra. He has also served on numerous editorial boards, and committees of the US Public Health Service, National Academy of Sciences-National Research Council, National Institutes of Health, and the Department of Energy and its affiliated national laboratories. A substantial portion of his scientific career has been spent in Japan studying the effects of exposure to ionizing radiation on the survivors of the atomic bombing of Hiroshima and Nagasaki. As a result of this involvement he was awarded the Order of the Sacred Treasure by Emperor Akihito in 1992. His interests in the effects on health of exposure to ionizing radiation and the role of genetic factors in the etiology of common chronic diseases has resulted in over 400 articles in professional journals, including 14 books that he has either edited or written. GEORGE J. ANNAS is the Utley Professor and Chair, Health Law Department, Boston University Schools of Medicine, Law, and Public Health. He is also the founder of the Law, Medicine and Ethics Program at Boston University. He has authored or edited a dozen books on health law and bioethics, including The Rights of Patients, Judging Medicine, and Standard of Care. He currently

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Evaluating Human Genetic Diversity writes a regular feature on health law in the New England Journal of Medicine, is co-chair of the Medical Practice and Medical Research Committee of the American Bar Association (Section on Science and Technology), is a member of the Special Committee on Genetic Information Policy of the Commonwealth of Massachusetts, and is coauthor of the proposed Genetic Privacy Act (written for ELSI). His primary interests are civil rights and civil liberties, especially of patients and other vulnerable populations, protection of research subjects, international human rights law, and health law. NORMAN ARNHEIM currently holds the Kawamoto Chair in Biological Sciences at the University of Southern California. Prior to arriving at USC in 1985 he was Chairman of the Human Genetics Department and Senior Scientist at Cetus Corporation (1983-1985) and a Professor of Biochemistry at the State University of New York, Stony Brook (1968-1983). Dr. Arnheim received his PhD degree from Dr. Curt Stern at Berkeley, was a postdoctoral fellow in Allan Wilson's laboratory and spent a sabbatical year with Ed Southern in Edinburgh. His current research interests center on germline genetic instability and involve the analysis of DNA sequences in single human and mouse sperm cells using the polymerase chain reaction. Dr. Arnheim has over 100 scientific publications and has lectured widely in the United States and abroad. JOHN BLANGERO is currently an Associate Scientist in the Department of Genetics at the Southwest Foundation for Biomedical Research in San Antonio, Texas. He holds a BA from Youngstown State University and a PhD (1987) from Case Western Reserve University. His research interests include statistical genetics, genetic epidemiology, and anthropological genetics. He has published 70 articles in professional journals primarily focusing on statistical and theoretical aspects of human genetics. He works on a number of ongoing projects including the identification of genes influencing predisposition to heart disease, diabetes, and infectious diseases. His research on the genetic basis of normal human variation has taken him to many parts of the world including projects in Tibet and Nepal. ARAVINDA CHAKRAVARTI received his PhD in human genetics from the Graduate School of Biomedical Sciences at the University of Texas Health Science Center in Houston in 1979. He was a postdoctoral fellow at the University of Washington in Seattle during 1979-1980, subsequent to which he joined the faculty at the Department of Biostatistics, University of Pittsburgh, as an Assistant Professor. He spent 13 years at Pittsburgh, eventually moving to the Department of Human Genetics as a Professor of Human Genetics and Psychiatry. Dr. Chakravarti is a past Associate Editor of the American Journal of Human Genetics , currently one of the Editors-in-Chief of Genetic Epidemiology and Genome Research, on the Advisory Editorial Boards of the European Journal of

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Evaluating Human Genetic Diversity Human Genetics, Human Molecular Genetics and Cytogenetics and Cell Genetics, and a member of the NIH Mammalian Genetics Study Section. He joined Case Western Reserve University in January 1994. VIRGINIA R. DOMINGUEZ is Co-Director of the International Forum for US Studies, Professor of Anthropology, and immediate past Director of the Center for International and Comparative Studies at the University of Iowa. Nationally she serves on the Board of Directors of the Society for Cultural Anthropology and on the editorial boards of Public Culture , the American Ethnologist, Public Worlds Books (University of Minnesota Press), and Transnational Cultural Studies (University of Illinois Press). She was born in Cuba, but spent much of her early life in and out of the US Since completing her PhD in 1979 at Yale University, she has taught at Duke University, the Hebrew University of Jerusalem, the University of California at Santa Cruz, and the University of Iowa. Her work has focused for many years on the historical and cross-cultural analysis of systems of social classification, how they develop, become discursively naturalized and institutionally entrenched. Among her publications are 4 books, including White by Definition: Social Classification in Creole Louisiana (1986) and People as Subject, People as Object: Selfhood and Peoplehood in Contemporary Israel (1989), and 4 (co)edited collections, including Questioning Otherness (1995), (Multi)Culturalisms and the Baggage of Race (1995), and the forthcoming From Beijing to Port Moresby: The National(ist) Politics of Cultural Policies. GEORGIA M. DUNSTON is Professor and Interim Chair of the Department of Microbiology at Howard University College of Medicine, where she has been on the faculty since 1972. She holds a BS from Norfolk State University, MS from Tuskegee University, and PhD in Human Genetics from the University of Michigan. She is currently a fellow in the Visiting Investigator's Program at the National Center for Human Genome Research (NCHGR) in the Laboratory of Gene Transfer, where she is conducting research on mutational analyses of the BRCA1 gene in African-American breast cancer families and participating in development of a collaboration between Howard University and the NCHGR in a research project on the West African origins of non-insulin dependent diabetes in African-Americans. In 1985, her interests in the biomedical significance of genomic polymorphisms in African-Americans led to her establishment of and service as the first and current director of the Human Immunogenetics Laboratory at Howard University, an NIH funded core research resource. She has served on the National Advisory Council for the National Institute of Environmental Health Sciences; the Genetic Basis of Disease Review Committee for the National Institute of General Medical Sciences, and as organizer of international workshops and symposia on human leukocyte antigen (HLA) polymorphisms in African-Americans. She has published several articles in professional journals and has

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Evaluating Human Genetic Diversity been invited to speak on HLA polymorphisms in African-Americans and its relevance to clinical transplantation and disease susceptibilities at universities and conferences in the United States and abroad. Her interests in the biomedical implications of human genome variability is the basis of current efforts to build research collaborations with investigators at African universities and facilitate greater international collaboration between African and African-American scientists in genomic research in African-American pedigrees. The latter has resulted in current membership on the North American Committee for the Human Genome Diversity Project. WARD H. GOODENOUGH is university professor emeritus of anthropology at the University of Pennsylvania, whose faculty he joined in 1949. His empirical research has been on the cultures and languages of Micronesia and Melanesia in the Western Pacific. He has also been concerned with how to put together ethnological, archaeological, linguistic, and human biological evidence to determine how the prehistoric settlement of the Pacific Islands came about. His theoretical interests have centered on the nature of culture and on the processes by which cultures come into being, are maintained, change, and evolve. His methodological interests have been on data gathering and analysis such as to arrive at replicable and testable models of the cultures of specific peoples (e.g., how to determine what one needs to know in order to conduct a search of title in the traditional land tenure system of a people under study). He is past president of the Society for Applied Anthropology and the American Ethnological Society and former member of the board of directors of the American Association for the Advancement of Science. He has served as editor of American Anthropologist. His books and monographs are: Property, Kin, and Community on Truk (1951, 1978); Cooperation in Change; An Anthropological Approach to Community Development (1963); Explorations in Cultural Anthropology (editor, 1964); Description and Comparison in Cultural Anthropology (1970); Culture, Language, and Society (1971, 1981); Trukese-English Dictionary (with Hiroshi Sugita, 1980 and 1990); Prehistoric Settlement of the Pacific Islands (editor, in press). RICHARD R. HUDSON is currently Professor of Biological Sciences at the University of California at Irvine where he has been since 1988. From 1983-1988 he was a Staff Fellow and then Research Mathematician at the National Institute of Environmental Health Sciences. He holds a BA from the University of California at San Diego and a PhD from the University of Pennsylvania. He has served on the editorial board of the journal Genetics and the journal Theoretical Population Biology . His main interests are the theory of population genetics and its application to understanding molecular variation within and between species. ERIC T. JUENGST is Associate Professor of Biomedical Ethics at the Case Western Reserve University School of Medicine in Cleveland, Ohio. He re-

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Evaluating Human Genetic Diversity ceived his PhD in Philosophy from Georgetown University in 1985, and has taught medical ethics and the philosophy of science on the faculties of the medical schools of Penn State University and the University of California, San Francisco. His research interests and publications have focused on the conceptual and ethical issues raised by new advances in human genetics and biotechnology, and from 1990 to 1994, he was the first Chief of the Ethical, Legal and Social Implications Branch of the National Center for Human Genome Research at the US National Institutes of health. He currently serves on the National Ethics Committee of the March of Dimes and the editorial boards of the Journal of Medicine and Philosophy, Human Gene Therapy , and the American Journal of Medical Genetics. MICHAEL M. KABACK, MD, is a Professor in the Departments of Pediatrics and Reproductive Medicine, and Chief, Division of Medical Genetics, Department of Pediatrics, University of California, San Diego. He is the Director of the State of California Tay-Sachs Disease Prevention Program and of the International Tay-Sachs Disease Testing, Quality Control, and Data Collection Program. He received a BA from Haverford College and an MD from the University of Pennsylvania, After training and fellowships (Johns Hopkins and National Institutes of Health) he has held faculty positions at Hopkins, UCLA, and UCSD. From 1986-1992, he served as Chair, Department of Pediatrics, UCSD, and Pediatrician-in-Chief, Children's Hospital and Health Center, San Diego. Dr. Kaback is a Founding Board Member of the American College of Medical Genetics. He has served as Vice President of the Society for Pediatric Research, President of the Western Society for Pediatric Research, and President of the American Society of Human Genetics. Dr. Kaback is a member of the Institute of Medicine, National Academy of Sciences, and a Fellow of the American Association for the Advancement of Science. He is a recipient of the 1993 William Allan Award, from the American Society of Human Genetics, for outstanding contributions to human genetics. Dr. Kaback is the North American Editor for Prenatal Diagnosis and Associate Editor for Advances in Pediatrics. He is a national and international lecturer on various topics in medical genetics. He has authored or co-authored 8 books on these topics and has co-authored more than 200 publication in the biomedical literature. Dr. Kaback's major research interests include genotype-phenotype correlation in the lysosomal storage disorders, applications of genetic technologies to the control of human genetic disease, and psycho-social issues in population-based genetic screening. DANIEL R. MASYS is Director of Biomedical Informatics, Office of the Dean, UCSD School of Medicine and Associate Professor of Medicine. An honors graduate of Princeton University and the Ohio State University College of Medicine, he completed postgraduate training in Internal Medicine, Hematology and Medical Oncology at the University of California, San Diego, and the Naval Regional Medical Center, San Diego. He served as Chief of the International

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Evaluating Human Genetic Diversity Cancer Research Data Bank of the National Cancer Institute, National Institutes of Health, and from 1986 through 1994 was Director of the Lister Hill National Center for Biomedical Communications, which is the Research and Development Division of the National Library of Medicine. At the Lister Hill Center, Dr. Masys was the principal architect of a program in computational biology which became the National Center for Biotechnology Information. He also served as the NIH representative to the federal High Performance Computing, Communications, and Information Technology Committee, which advised the President's Office of Science and Technology Policy in the area of advanced computing and National Information Infrastructure. Dr. Masys is a Diplomate of the American Board of Internal Medicine in Medicine, Hematology, and Medical Oncology. He is a Fellow of the American College of Physicians and a Fellow of the American College of Medical Informatics. He is a founding associate editor of the Journal of the American Medical Informatics Association, and has received numerous awards including the NIH Director's Award, Public Health Service Outstanding Service Medal, and the US Surgeon General's Exemplary Service Medal. KATHRYN L. MOSELEY is the Director of Biomedical Ethics for the Henry Ford Health System. She is board certified in both pediatrics and neonatology. Her research interests include ethnic and cultural issues in medical ethics as they affect patients and providers. Dr. Moseley received her undergraduate degree from Harvard University and her medical degree from the University of Michigan. She studied moral theology at Aquinas Institute of Theology in St. Louis. During that time, Dr. Moseley served on the faculty of the Center for Health Care Ethics at the St. Louis University School of Medicine. She also completed a fellowship in clinical medical ethics at the Center for Clinical Medical Ethics at the University of Chicago. Dr. Moseley is a board member of the Society for Bioethics Consultation and is the President of the Medical Ethics Resource Network of Michigan. She is also a member of the Committee on Bioethics of the American Academy of Pediatrics. ROBERT R. SOKAL, is currently Distinguished Professor Emeritus of Ecology and Evolution at the State University of New York, Stony Brook. His background is population biology, anthropology, and systematics. Education: St. John's University, Shanghai, China, BS (biology), 47; Univ. of Chicago, PhD (zoology), 52. His professional experience includes instructor to associate professor, University of Kansas, 51-61; professor, 61-69; professor, State University of NY at Stony Brook, 68-72; leading professor 72-91; distinguished professor 91-95, 95-. He held concurrent positions as Fulbright visiting professor, Hebrew and Tel Aviv Universities, Israel, 63-64; visiting distinguished scientist, University of Michigan, 75-76; visiting professor, Institute for Advanced Studies, Portugal, 71-80; visiting professor, University of Vienna, Austria, 77-78; Fulbright

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Evaluating Human Genetic Diversity professor, University of Vienna, Austria, 84; visiting professor, College de France, Paris, 89; editor, American Naturalist, 69-74; president, Classification Soc, 69-71; president, Society for the Study of Evolution, 77; director, NATO Advanced Study Institute, 82; president, American Society of Naturalists, 84; president, International Federation of Classification Society, 88-89. ALAN R. TEMPLETON is currently Professor of Biology and Genetics at Washington University, St. Louis, Missouri. He first went to Washington University in 1977 as an Associate Professor, and was promoted to Professor in 1981. Between 1974 to 1977, he was an Assistant Professor of Zoology at the University of Texas at Austin. He holds a BA from Washington University in Zoology, an MA in Statistics from the University of Michigan, and a PhD in Human Genetics from the University of Michigan. He has served as a visiting professor at the University of Sao Paulo (Brazil), the University of Michigan, and Oxford University (Merton College). He has served on the editorial board of six journals, and was an editor of Theoretical Population Biology from 1981 to 1990. He is a member of several scientific organizations, and is currently the President of the Society for the Study of Evolution. He was one of the founding members of the Society for Conservation Biology, and he is active in many organizations and on boards related to conservation issues. He has published 128 article since 1973 on his research in population genetics, human genetics, conservation biology, and speciation. Since 1973 he has given 126 invited seminars at universities in the United States and abroad, and has given numerous presentations at research conferences and 74 invited symposia talks. LAP-CHEE TSUI is Senior Scientist and Sellers Chair of Cystic Fibrosis Research in the Department of Genetics at the Research Institute of the Hospital for Sick Children, Toronto, and Professor of Molecular and Medical Genetics at the University of Toronto. He was born in Shanghai, raised and educated in Hong Kong, and there awarded his bachelor and master degrees from the Chinese University of Hong Kong. In 1979, he received his doctoral degree (PhD) from the University of Pittsburgh. After training briefly in the Biology Division of Oak Ridge National Laboratory, he joined the Department of Genetics at The Hospital for Sick Children to work on cystic fibrosis (CF), a frequently fatal inherited disorder that affects about 1 in 2,500 Caucasian children in the world. In 1985, together with Dr. M. Buchwald and scientists at Collaborative Research Inc., he identified the first DNA marker linked to CF on chromosome 7. Four years later, Dr. Tsui, together with Dr. Jack Riordan at Toronto's Hospital for Sick Children and Dr. Francis Collins at University of Michigan, isolated the Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) gene. His current research activities include molecular genetics of CF, a human genome project on the study of chromosome 7, and genetic studies in Tourette syndrome. Dr. Tsui has published 160 peer-reviewed articles and 60 invited papers. He has

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Evaluating Human Genetic Diversity served on many national and international advisory committees and is currently on the editorial board of 8 scientific journals. He has received numerous awards for his research and 4 honorary degrees. GEORGE C. WILLIAMS is Professor Emeritus of Ecology and Evolution at the State University of New York, Stony Brook, and Adjunct Professor of Biology at Queen's University, Kingston, Ontario. He has a PhD in zoology from UCLA and Sc.D. (honorary) from Queen's University. He has been Instructor and Assistant Professor at Michigan State University, Distinguished Visiting Investigator at the Museum of Zoology, University of Michigan, Fellow of the Center for Advanced Study in the Behavioral Sciences, a Guggenheim Fellow, and Visiting Investigator at the Marine Research Institute, Reykjavik. He was elected Ecologist of the Year (1989) by the Ecological Society of America. TANIA WILLIAMS is a program officer in the Commission on Life Science's Board on Biology. Ms. Williams has worked on various projects for the Research Council since 1990. She received a Commission on Life Sciences staff performance award in 1992, a Commission on Geosciences, Environment, and Resources staff performance award in 1995, and a Commission on Life Sciences group performance award in 1995. She has staffed studies on environmental information for outer continental shelf oil and gas leasing decisions in Alaska, protection and management of salmon in the Pacific Northwest, wetland characterization, biomonitoring of environmental status and trends, scientific bases for preservation of the Mariana crow, and valuing biodiversity. Before she joined the Research Council, she was a cost-benefit analyst and technical writer for Wilson, Hill Associates and a research assistant in retail stock trends for Alex. Brown & Sons. She holds a BS in physiological psychology from Allegheny College.