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Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata (2010)

Chapter:Appendix C Biographical Sketches of Panel Members and Staff

« Previous: Appendix B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys
Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
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Appendix C
Biographical Sketches of Panel Members and Staff

Robert M. Hauser (Chair) is Vilas Research professor of sociology and director, Center for Demography of Health and Aging at the University of Wisconsin, Madison. His research in sociology, statistics, and demography has addressed aging and the life course, social and economic inequality, educational attainment, and cross-national and cross-temporal comparisons of intergenerational mobility. Since 1980, he has led the Wisconsin Longitudinal Study (WLS), which has followed the life course of more than 10,000 Wisconsin high school graduates. Dr. Hauser is a fellow of the American Statistical Association and a member of the National Academy of Sciences. He has served on numerous National Research Council (NRC) committees, including the Panel on Institutional Review Boards, Surveys, and Social Science Research; the Panel to Review the 2000 Census; and the Committee on Performance Levels for Adult Literacy. He holds a B.A. in economics from the University of Chicago and an M.A. and Ph.D., both in sociology, from the University of Michigan.


George M. Church is professor of genetics at Harvard Medical School and director of the Center for Computational Genetics. With degrees from Duke University in chemistry and zoology, he coauthored research on 3-D software and RNA structure with Sung-Hou Kim. His work on his Ph.D. from Harvard in biochemistry and molecular biology with Wally Gilbert included the first direct genomic sequencing method in 1984. Dr. Church initiated the Human Genome Project as a research scientist at newly formed Biogen Inc. and a Monsanto life sciences research fellow at the University of California, San Francisco, with Gail Martin. He invented the broadly applied concepts

Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

of molecular multiplexing and tags, homologous recombination methods, and array DNA synthesizers. Technology transfer of automated sequencing and software to Genome Therapeutics Corp. resulted in the first commercial genome sequence (the human pathogen H. pylori, 1994). Dr. Church has served in advisory roles for 12 journals (including Nature Molecular Systems Biology), five granting agencies, and 24 biotech companies (founding Knome, Joule, and LS9). His current research focuses on integrating biosystems modeling with the Personal Genome Project and synthetic biology.


Barney Cohen (Study Director) is director of the Committee on Population of the National Academies/NRC. His work at the NRC has encompassed a wide variety of domestic and international projects, including studies on fertility, morbidity, mortality, housing, urbanization, migration, aging, and HIV/AIDS. Currently, he is also serving as the liaison of the National Academies to the Academy of Science of South Africa and the Ghanaian Academy of Arts and Sciences as part of a larger project aimed at supporting the development of academies of science in Africa. Dr. Cohen holds an M.A. in economics from the University of Delaware and a Ph.D. in demography from the University of California, Berkeley.


George T. Duncan joined the Carnegie Mellon University faculty in the Department of Statistics in 1974 and the Heinz College faculty in 1978. He became professor emeritus in 2008. He has served as director of the Heinz College’s M.S., M.P.M., and Ph.D. programs. He served as associate dean for faculty from 2001 to 2002. Prior to coming to Carnegie Mellon, Dr. Duncan taught in the mathematics department at the University of California, Davis. He is a visiting faculty member at Los Alamos National Laboratory, has been a visitor at Cambridge University, and was Lord Simon visiting professor at the University of Manchester in 2005. He is a fellow of the American Statistical Association, a fellow of the American Association for the Advancement of Science, a fellow of the Royal Statistical Society, and an elected member of the International Statistical Institute. Dr. Duncan’s general research interests are in Bayesian decision making and information technology and social accountability. His primary focus is on confidentiality of statistical databases. His work has appeared in leading journals, including the Journal of the American Statistical Association, Management Science, Econometrica, Operations Research, Psychometrika, and Biometrika. He holds a B.S. and an M.S. in statistics from the University of Chicago and a Ph.D. in statistics from the University of Minnesota.


Henry T. Greely is Deane F. and Kate Edelman Johnson professor of law in Stanford University’s Law School. He also holds an appointment (by courtesy) with the Stanford University Department of Genetics. Professor Greely specializes in the legal implications of new biomedical technologies, especially those

Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

related to genetics, neurosciences, and stem cells. He frequently serves as an advisor on California, national, and international policy issues. He chairs the California Advisory Committee on Human Embryonic Stem Cell Research, is a codirector of the Law and Neuroscience Project, and is a founder and executive committee member of the Neuroethics Society. Active in university leadership, Professor Greely chairs the steering committee for the Stanford Center for Biomedical Ethics, directs the law school’s Center for Law and the Biosciences and the Stanford Center for Biomedical Ethics’ Program on Stem Cells in Society, and serves on the leadership council for the university’s interdisciplinary Bio-X Program. He is a fellow of the American Association for the Advancement of Science. He holds a J.D. from Yale Law School.


Myron P. Gutmann is assistant director of the National Science Foundation, with responsibility for the Directorate for the Social, Behavioral, and Economic Sciences. He is also research professor at the Inter-university Consortium for Political and Social Research (ICPSR) and professor of history and information, University of Michigan. From 2001 to 2009 he served as director of ICPSR. He has a broad range of interests in interdisciplinary historical population studies, especially relating population to agriculture, the environment, and health. He also studies ways in which digital materials can be properly preserved and shared and how the confidentiality of research subjects can be protected when data about them is made available for secondary use. Dr. Gutmann teaches about historical demography and about the social, demographic, and economic history of Europe and the Americas. He holds an M.A. and a Ph.D. from Princeton University. He has served on a number of national and international advisory committees, including the U.S. Committee for CODATA and the National Academies’ Board on Research Data and Information. Dr. Gutmann’s work on this panel was completed before he assumed his position at the National Science Foundation.


Robert J. Levine is professor of medicine and lecturer in pharmacology; director of the Law, Policy and Ethics Core of the Center for Interdisciplinary Research on AIDS; and senior fellow in bioethics at Yale University. He is a fellow of the Hastings Center and the American College of Physicians; a member of the American Society for Clinical Investigation and American Society for Pharmacology and Experimental Therapeutics; a director and former vice chair of PRIM&R (Public Responsibility in Medicine and Research); past president of the American Society of Law, Medicine and Ethics (two terms); and past chairman of the Connecticut Humanities Council. In the past he was also chair of the Institutional Review Board at Yale-New Haven Medical Center (1969–2000), founding codirector of Yale University’s Interdisciplinary Bioethics Center, chief of the Section of Clinical Pharmacology at Yale, chairman of the Section on Medico-Legal Matters and R&D Administration of the American Society

Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

for Clinical Pharmacology and Therapeutics, Associate Editor of Biochemical Pharmacology, and editor of Clinical Research. Dr. Levine is the founding editor of IRB: A Review of Human Subjects Research (editor 1979–2000 and currently chair of the Editorial Board) and has served as consultant to several federal and international agencies involved in the development of policy for the protection of human subjects (including twice serving as chair of the Council for International Organizations of Medical Sciences Steering Committee to revise its International Ethical Guidelines for Biomedical Research Involving Human Subjects). He is the author of numerous publications, including the book Ethics and Regulation of Clinical Research (two editions). In the last 35 years, most of Dr. Levine’s research, teaching, and publications have been in the field of medical ethics, with particular focus on the ethics of research involving human subjects.


John Quackenbush is professor of computational biology and bioinformatics with appointments in the Department of Biostatistics, Harvard School of Public Health, and the Dana-Farber Cancer Institute. His work focuses on the challenges of how best to collect, manage, and analyze genomics data, with an emphasis on methods, spanning the laboratory to the laptop, for using genomic and computational approaches to reveal the underlying biology. Recently he has been looking at patterns of gene expression in cancer with the goal of elucidating the networks and pathways that are fundamental in the development and progression of the disease. He holds a Ph.D. in theoretical particle physics from the University of California, Los Angeles.


Jerome P. Reiter is associate professor of statistical science, Department of Statistical Science, Duke University. His methodological research focuses mainly on ways of protecting confidentiality in public-use data, handling missing data in large surveys, and drawing causal inferences in observational data. Dr. Reiter is chair of the Privacy and Confidentiality Committee of the American Statistical Association. He is associate editor of several publications, including the Journal of Privacy and Confidentiality, the Journal of the American Statistical Association, and Survey Methodology. He holds a B.S. from Duke University and a Ph.D. in statistics from Harvard University.


Robert B. Wallace is professor of epidemiology, Department of Epidemiology, and director of the Center on Aging at the University of Iowa. His current research interests include the epidemiology of aging, cancer epidemiology and control, and survey research. He presently is leading the Women’s Health Initiative in Iowa, and he was recently named chair of the Board on Select Populations of the Institute of Medicine. He is a member of the Institute of Medicine and has served on several NRC committees. Dr. Wallace holds an M.D. from

Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

Northwestern University and an M.Sc. in epidemiology from the State University of New York, Buffalo.


Maxine Weinstein joined the faculty of Georgetown University in 1987; she holds an appointment in the Graduate School of Arts and Sciences as distinguished professor of population and health. Her work explores the behavioral and biological dimensions of reproduction and aging. She is an investigator on the Taiwan project, a study that explores the reciprocal relations among stress, health, and the social environment among the elderly. She is also an investigator on the MIDUS II study. Dr. Weinstein holds a B.S. from Antioch College and a Ph.D. from Princeton University.

Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×

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Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
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Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
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Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page101
Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page102
Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
Page103
Suggested Citation:"Appendix C Biographical Sketches of Panel Members and Staff." National Research Council. 2010. Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Washington, DC: The National Academies Press. doi: 10.17226/12942.
×
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Recent years have seen a growing tendency for social scientists to collect biological specimens such as blood, urine, and saliva as part of large-scale household surveys. By combining biological and social data, scientists are opening up new fields of inquiry and are able for the first time to address many new questions and connections. But including biospecimens in social surveys also adds a great deal of complexity and cost to the investigator's task. Along with the usual concerns about informed consent, privacy issues, and the best ways to collect, store, and share data, researchers now face a variety of issues that are much less familiar or that appear in a new light.

In particular, collecting and storing human biological materials for use in social science research raises additional legal, ethical, and social issues, as well as practical issues related to the storage, retrieval, and sharing of data. For example, acquiring biological data and linking them to social science databases requires a more complex informed consent process, the development of a biorepository, the establishment of data sharing policies, and the creation of a process for deciding how the data are going to be shared and used for secondary analysis--all of which add cost to a survey and require additional time and attention from the investigators. These issues also are likely to be unfamiliar to social scientists who have not worked with biological specimens in the past. Adding to the attraction of collecting biospecimens but also to the complexity of sharing and protecting the data is the fact that this is an era of incredibly rapid gains in our understanding of complex biological and physiological phenomena. Thus the tradeoffs between the risks and opportunities of expanding access to research data are constantly changing.

Conducting Biosocial Surveys offers findings and recommendations concerning the best approaches to the collection, storage, use, and sharing of biospecimens gathered in social science surveys and the digital representations of biological data derived therefrom. It is aimed at researchers interested in carrying out such surveys, their institutions, and their funding agencies.

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