Cells and Surveys

Should Biological Measures Be Included in Social Science Research?

Committee on Population

Caleb E.Finch, James W.Vaupel, and Kevin Kinsella, Editors

Commission on Behavioral and Social Sciences and Education

National Research Council

NATIONAL ACADEMY PRESS
Washington, D.C.



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Cells and Surveys: Should Biological Measures be Included in Social Science Research? Cells and Surveys Should Biological Measures Be Included in Social Science Research? Committee on Population Caleb E.Finch, James W.Vaupel, and Kevin Kinsella, Editors Commission on Behavioral and Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, D.C.

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, D.C. 20418 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Task Order 49 under NIH Contract No. NOI-OD-4–2139 between the National Academy of Sciences and the Office of the Demography of Aging, National Institute of Aging, National Institutes of Health, U.S. Department of Health and Human Services. Additional funding was provided by the Office of the Director of the Behavioral and Social Research Program, National Institutes of Health, by the William and Flora Hewlett Foundation, and by the Andrew W.Mellon Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Suggested citation: National Research Council (2000) Cells and Surveys: Should Biological Measures Be Included in Social Science Research? Committee on Population. Caleb E.Finch, James W.Vaupel, and Kevin Kinsella, eds. Commission on Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press. Library of Congress Cataloging-in-Publication Data Cells and surveys: should biological measures be included in social science research?/Committee on Population ; Caleb E.Finch, James W. Vaupel, and Kevin Kinsella, editors. p. cm. Includes bibliographical references and index. ISBN 0-309-07199-2 (pbk.) 1. Social medicine—Congresses. 2. Medical ethics—Congresses. 3. Bioethics—Congresses. 4. Demography—Congresses. 5. Medical genetics—Congresses. I.Finch, Caleb Ellicott. II. Vaupel, James W. III. Kinsella, Kevin G. IV. National Research Council (U.S.). Committee on Population. V. Title. RA418 .C45 2001 300'.7'23–dc21 00–012155 Additional copies of this report are available from National Academy Press, 2101 Constitution Avenue, N.W., Lockbox 285, Washington, D.C. 20055; (800) 624–6242 or (202) 334–3313 (in the Washington metropolitan area); Internet, http://www.nap.edu Printed in the United States of America Copyright 2001 by the National Academy of Sciences. All rights reserved.

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M.Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. William A.Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Kenneth I.Shine is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M.Alberts and Dr. William A.Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? COMMITTEE ON POPULATION JANE MENKEN (Chair), Institute of Behavioral Sciences, University of Colorado, Boulder CAROLINE H.BLEDSOE,* Department of Anthropology, Northwestern University JOHN BONGAARTS, The Population Council, New York ELLEN BRENNAN-GALVIN, Population Division, United Nations, New York JOHN N.HOBCRAFT, Population Investigation Committee, London School of Economics F.THOMAS JUSTER, Institute for Social Research, University of Michigan, Ann Arbor CHARLES B.KEELY, Department of Demography, Georgetown University DAVID I.KERTZER, Department of Anthropology, Brown University DAVID A.LAM, Population Studies Center, University of Michigan, Ann Arbor LINDA G.MARTIN,* The Population Council, New York MARK R.MONTGOMERY,* The Population Council, New York, and Department of Economics, State University of New York, Stony Brook W.HENRY MOSLEY, Department of Population and Family Health Sciences, Johns Hopkins University ALBERTO PALLONI, Center for Demography and Ecology, University of Wisconsin, Madison JAMES P.SMITH, RAND, Santa Monica, California BETH J.SOLDO,* Population Studies Center, University of Pennsylvania JAMES W.VAUPEL, Max Planck Institute for Demographic Research, Rostok, Germany KENNETH W.WACHTER, Department of Demography, University of California, Berkeley LINDA J.WAITE, Population Research Center, University of Chicago BARNEY COHEN, Director KEVIN KINSELLA, Study Director BRIAN TOBACHNICK, Project Administrative Coordinator *   Through October 1999.

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? CONTRIBUTORS JEFFREY R.BOTKIN, University of Utah KAARE CHRISTENSEN, University of Southern Denmark EILEEN M.CRIMMINS, University of Southern California SHARON J.DURFY, University of Washington DOUGLAS EWBANK, University of Pennsylvania CALEB E.FINCH, University of Southern California JEFFREY B.HALTER, University of Michigan QUBAI HU, University of Washington GEORGE M.MARTIN, University of Washington GERALD E.McCLEARN, Pennsylvania State University RICHARD A.MILLER, University of Michigan DAVID B.REUBEN, University of California, Los Angeles TERESA SEEMAN, University of California, Los Angeles JAMES W.VAUPEL, Max Planck Institute for Demographic Research, Rostock, Germany GEORGE P.VOGLER, Pennsylvania State University KENNETH W.WACHTER, University of California, Berkeley ROBERT B.WALLACE, University of Iowa MAXINE WEINSTEIN, Georgetown University ROBERT J.WILLIS, University of Michigan

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? Preface In 1997 the Committee on Population published Between Zeus and the Salmon: The Biodemogmphy of Longevity, a volume that drew on various disciplinary perspectives to take stock of what demography and biology could tell us about the trajectory of human longevity. One prescient chapter, written by Robert Wallace, noted the need to explore the potential usefulness of collecting biological (and especially genetic) data in the context of large, population-based surveys. As the 1990s drew to a close, it became increasingly clear that advances in biodemography require a greater ability to analyze the interactions of genes, the environment, and behaviors, which in turn require linked data on all three domains. Recent technical developments in the collection and analysis of biological data have made it much more feasible to collect such information in nonclinical settings. Given the financial considerations created by researchers’ appetites for ever more complex data, and the finite amount of public money that will ever be devoted to data collection, there is mounting pressure for multipurpose household surveys to collect biological data along with the more familiar interviewer-respondent question-and-answer type of information. Many surveys to date have collected some biological and/or clinical data. Before the pressure to collect biological data in social surveys becomes broad-based and overwhelming, those who fund, design, and analyze survey data need to think through the rationale and potential consequences. Thus it was that the National Institute on Aging (NIA), which funds many of the cutting-edge social science surveys in the United

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? States, asked The National Academies to organize a series of planning meetings, culminating in a workshop on “Collecting Biological Indicators and Genetic Information in Household Surveys,” held in Washington, D.C., in February 2000. Committee on Population workshops are designed to be stimulating fora for researchers and policy makers from a wide range of disciplines. This meeting brought together demographers, economists, epidemiologists, ethicists, molecular biologists, physiologists, geneticists, pathologists, and sociologists, in addition to representatives of numerous government agencies. The workshop and this resultant volume sought to address a range of questions. What can social science, and demography in particular, reasonably expect to learn from biological information? Which genetic, pedigree, historical, and environmental data ought to be collected in order to be most useful to a wide range of scientists? Are there likely to be unintended side effects of amassing biological data (for example, what will attempts to collect bioindicators do to survey response rates, or to the quality of self-reported data)? How might ethical duties to research subjects change with the collection of bioindicators? How will confidentiality issues be handled? The methodological challenges for marrying large population surveys to genetic hypotheses are complex and not easily solved, in part because extant surveys have been structured and funded to address a set of important nongenetic scientific questions. This report summarizes the workshop presentations. The chapters were enriched by the free-flowing workshop discussion that helped to sharpen key concerns and expand the breadth of several papers. A special note of thanks in this regard goes to Raynard Kington, director of the National Health and Nutrition Examination Survey, who shared his knowledge of and visions for future survey research. The chapters were then peer reviewed, and we owe a debt of gratitude to the many individuals who generously gave of their time to review and further strengthen the contents of this volume. For their insightful and constructive remarks, we would like to thank George Annas, Lisa Berkman, Ties Boerma, Charles Boult, Joy Boyer, Wylie Burke, James Carey, James Curtsinger, Ronald Freedman, Leonid Gavrilov, Noreen Goldman, Evan Hadley, Jennifer Harris, Richard Havlik, Wendy Mack, Scott Pletcher, Karen Swallen, Marc Tatar, Elizabeth Thomson, Martin Vaessen, and several anonymous reviewers. Our greatest debt is to Caleb Finch and James Vaupel, who not only cochaired the workshop and edited the volume, but also were instrumental in developing the workshop framework, identifying a stellar cadre of authors and reviewers, and guiding authors in their revisions. We also would particularly like to thank Richard Suzman of the NIA who, as the prime motivator of this endeavor, shared his expertise and consistently

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? challenged all involved to expand the boundaries of inquiry. The committee is grateful to a number of colleagues who worked with the cochairs and me on a steering committee to develop this project. These include demographers Douglas Ewbank, Beth Soldo, and Kenneth Wachter; three members of the National Research Council’s Committee on National Statistics, William Kalsbeek, Thomas Louis, and Edward Perrin; and two members of The National Academies Board on Biology, Robert Sokal and Raymond White. Benjamin Wilfond of the National Human Genome Research Institute was especially helpful in providing initial guidance and information regarding ethical and legal issues that would need to be addressed. Thanks are also due to staff and associates of the National Research Council. Brian Tobachnick coordinated the logistical and travel arrangements for the workshop and assisted with myriad aspects of manuscript preparation. Randi M.Blank edited the volume and made suggestions for the glossary. Christine McShane guided the manuscript through the publication process. Sally Stanfield and the Audubon team at the National Academy Press handled the technical preparation of the report. Kevin Kinsella directed the study and coordinated the review process. Development and execution of this project occurred under the general guidance of the committee’s director, Barney Cohen. Jane Menken Chair, Committee on Population

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? Contents     INTRODUCTION     1   Collecting Biological Indicators in Household Surveys Caleb E.Finch and James W.Vaupel   1     THE USE OF BIOINDICATORS IN DEMOGRAPHIC AND SOCIAL RESEARCH     2   Integrating Biology into Demographic Research on Health and Aging (With a Focus on the MacArthur Study of Successful Aging) Eileen M.Crimmins and Teresa Seeman   9 3   Biological Material in Household Surveys: The Interface Between Epidemiology and Genetics Kaare Christensen   42     THE POTENTIAL FOR USING GENETIC INFORMATION IN DEMOGRAPHY     4   Demography in the Age of Genomics: A First Look at the Prospects Douglas Ewbank   64 5   The Value of Sibling and Other “Relational” Data for Biodemography and Genetic Epidemiology George P.Vogler   110

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Cells and Surveys: Should Biological Measures be Included in Social Science Research?     RESEARCH ON AGING HUMAN SUBJECTS     6   Opportunities for Population-Based Research on Aging Human Subjects: Pathology and Genetics George M.Martin and Qubai Hu   133 7   Indicators of Function in the Geriatric Population Jeffrey B.Halter and David B.Reuben   159     THE RELEVANCE OF ANIMAL MODELS AND STUDIES FOR HUMAN POPULATIONS     8   Biomarkers and Genetics of Aging in Mice Richard A.Miller   180 9   Relevance of Animal Models for Human Populations Gerald E.McClearn   213     VALUE-ADDED SURVEY RESEARCH     10   Applying Genetic Study Designs to Social and Behavioral Population Surveys Robert B.Wallace   229 11   Stretching Social Surveys to Include Bioindicators:Possibilities for the Health and Retirement Study, Experience from the Taiwan Study of the Elderly Maxine Weinstein and Robert J.Willis   250     CONSENT, PRIVACY, AND GROUP HARM CONSIDERATIONS     12   Informed Consent for the Collection of Biological Samples in Household Surveys Jeffrey R.Botkin   276 13   Ethical and Social Issues in Incorporating Genetic Research into Survey Studies Sharon J.Durfy   303     REFLECTION     14   Biosocial Opportunities for Surveys Kenneth W.Wachter   329     SUGGESTED READINGS   337     GLOSSARY   339     INDEX   349

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Cells and Surveys: Should Biological Measures be Included in Social Science Research? Cells and Surveys

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