CONDUCTING BIOSOCIAL SURVEYS

Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata

Robert M. Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen, Editors

Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys

Committee on National Statistics

Committee on Population

Division of Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS

Washington, D.C.
www.nap.edu



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page R1
CONDUCTING BIOSOCIAL SURVEYS Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata Robert M. Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen, Editors Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys Committee on National Statistics Committee on Population Division of Behavioral and Social Sciences and Education

OCR for page R1
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 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 Contract No. N01-OD-4-2139 between the National Academy of Sciences and the National Institutes of Health. Support for the work of the Committee on National Statistics is provided by a consortium of federal agencies through a grant from the National Science Foundation (award number SES-0453930). Any opinions, findings, conclusion, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organization or agencies that provided support for the project. International Standard Book Number-13: 978-0-309-15706-3 International Standard Book Number-10: 0-309-15706-4 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334- 3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. Copyright 2010 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Research Council. (2010). Conducting Biosocial Surveys: Collecting, Storing, Accessing, and Protecting Biospecimens and Biodata. Robert M. Hauser, Maxine Weinstein, Robert Pool, and Barney Cohen, Eds. Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys. Committee on National Statistics and Committee on Population, Division of Behavioral and Social Sciences and Education. Washington, DC: The National Academies Press.

OCR for page R1
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. Ralph J. Cicerone 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. Charles M. Vest 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 examina - tion 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. Harvey V. Fineberg 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. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

OCR for page R1

OCR for page R1
PANEL ON COLLECTINg, STORINg, ACCESSINg, AND PROTECTINg BIOLOgICAL SPECIMENS AND BIODATA IN SOCIAL SuRvEyS ROBERT M. HAUSER (Chair), Department of Sociology, University of Wisconsin, Madison GEORGE M. CHURCH, Department of Genetics, Harvard University GEORGE T. DUNCAN, H. John Heinz III School of Public Policy and Management, Carnegie Mellon HENRY T. GREELY, Stanford Law School, Stanford University MYRON P. GUTMANN, Directorate for Social, Behavioral and Economic Sciences, National Science Foundation ROBERT J. LEVINE, Interdisciplinary Center for Bioethics Institution for Social and Policy Studies, Yale University JOHN QUACKENBUSH, Department of Biostatistics, Harvard University JEROME P. REITER, Department of Statistical Science, Duke University ROBERT B. WALLACE, Department of Epidemiology, University of Iowa MAXINE WEINSTEIN, Center for Population and Health, Georgetown University BARNEY COHEN, Study Director ROBERT POOL, Consultant ULYANA VJUGINA DESIDERIO, Christine Mirzayan Fellow JACQUELINE R. SOVDE, Program Associate v

OCR for page R1
COMMITTEE ON NATIONAL STATISTICS WILLIAM F. EDDY (Chair), Department of Statistics, Carnegie Mellon University KATHARINE G. ABRAHAM, Department of Economics, University of Maryland, and Joint Program in Survey Methodology ALICA CARRIQUIRY, Department of Statistics, Iowa State University WILLIAM DuMOUCHEL, Phase Forward, Inc., Waltham, Massachusetts JOHN HALTIWANGER, Department of Economics, University of Maryland V. JOSEPH HOTZ, Department of Economics, Duke University KAREN KAFADAR, Department of Statistics, Indiana University SALLIE KELLER, George R. Brown School of Engineering, Rice University LISA LYNCH, Heller School for Social Policy and Management, Brandeis University DOUGLAS MASSEY, Department of Sociology, Princeton University SALLY C. MORTON, Statistics and Epidemiology, RTI International, Research Triangle Park, North Carolina JOSEPH NEWHOUSE, Division of Health Policy Research and Education, Harvard University SAMUEL H. PRESTON, Population Studies Center, University of Pennsylvania HAL STERN, Department of Statistics, University of California, Irvine ROGER TOURANGEAU, Joint Program in Survey Methodology, University of Maryland, and Survey Research Center, University of Michigan ALAN ZASLAVSKY, Department of Health Care Policy, Harvard Medical School CONSTANCE F. CITRO, Director vi

OCR for page R1
COMMITTEE ON POPuLATION LINDA J. WAITE (Chair), Department of Sociology, University of Chicago CHRISTINE BACHRACH, Social Science Research Institute, Duke University, and School of Behavioral and Social Sciences, University of Maryland EILEEN M. CRIMMINS, Department of Sociology, University of Southern California PETER J. DONALDSON, Population Council, New York, New York BARBARA ENTWISLE, Department of Sociology, University of North Carolina, Chapel Hill JOSHUA R. GOLDSTEIN, Max Planck Institute for Demographic Research, Rostock, Germany CHARLES HIRSCHMAN, Department of Sociology, University of Washington BARTHéLéMY KUATE-DEFO, Department of Demography, University of Montreal WOLFGANG LUTZ, World Population Program, International Institute for Applied Systems Analysis, Laxenburg, Austria DUNCAN THOMAS, Economics Department, Duke Global Health Institute, Duke University BARBARA B. TORREY, Independent Consultant, Washington, DC MAXINE WEINSTEIN, Center for Population and Health, Georgetown University BARNEY COHEN, Director vii

OCR for page R1

OCR for page R1
Acknowledgments T his report reflects the efforts of many people, each of whom has contrib - uted their time and expertise. In November 2008, the committee orga- nized a public workshop and benefited greatly from the assistance and insight of many colleagues including: John Abowd, Cornell University; Paul S. Appelbaum, Columbia University; Ellen Wright Clayton, Vanderbilt University; Jennifer Harris, The Norwegian Institute of Public Health, Oslo; Kathie Mullan Harris, University of North Carolina; Murat Kantarcioglu, University of Texas; Alan F. Karr, National Institute of Statistical Sciences; Bartha M. Knoppers, University of Montreal; Barbara A. Koenig, Mayo College of Medicine; Karen J. Maschke, Hastings Center; Leslie Shaw, University of Pennsylvania; Kathi Shea, SeraCare, Inc.; Mary Fran Sowers, University of Michigan; Barbara Stanley, Columbia University; Holly Taylor, The Johns Hopkins University; Alan Westin, Columbia University (emeritus). The project was undertaken at the request of the Division of Behavioral and Social Research at the National Institute on Aging (NIA) and funding from the NIA has made this report possible. Particular thanks go to Dr. Richard Suzman who was a catalyst for this report, both intellectually and financially, and we are grateful to him and the NIA for their support. Several members of the staff of the National Academies made significant contributions to the report. The committee was established under the auspices of the Committee on National Statistics, directed by Connie Citro, who was instrumental in developing the study and provided guidance and support to the staff throughout the project. Particular thanks are due to Barney Cohen, ix

OCR for page R1
x ACKNOWLEDGMENTS who served as the study director, Robert Pool for research and writing assis - tance, Ulyana Vjugina Desiderio for research assistance, and Jacqui Sovde for logistical support, Kirsten Sampson Snyder for help guiding the report through review, Rona Briere and Eugenia Grohman for skilful editing, and Yvonne Wise for managing the production process. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s (NRC’s) Report Review Commit- tee. The purpose of this independent review is to provide candid and critical comments that assist the institution in making its report as sound as possible, and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manu- script remain confidential to protect the integrity of the deliberative process. The committee wishes to thank that following individuals for their review of this report: Kathleen Mullan Harris, National Longitudinal Study of Adoles- cent Health (Add Health), University of North Carolina, Chapel Hill; Meena Kumari, Department of Epidemiology and Public Health, University Col- lege London; Nancy A. Mathiowetz, Public Opinion Quarterly, University of Wisconsin, Milwaukee; Thomas McDade, The Center on Social Disparities and Health, Institute for Policy Research, Northwestern University; Eleanor Singer, Institute for Social Research, University of Michigan; Richard L. Sprott, Office of the Executive Director, The Ellison Medical Foundation, Bethesda, Maryland; James W. Vaupel, Office of the Executive Director, Max Planck Institute for Demographic Research, Rostock, Germany; and Kenneth M. Weiss, Department of Anthropology, Pennsylvania State University. Although the reviewers listed above have provided many constructive com - ments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release. The review of this report was overseen by Richard A. Kulka, Survey Research, Abt Associates Inc., Durham, North Carolina. Appointed by the NRC, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution. I close by expressing my great appreciation to my fellow committee mem- bers. This report results from the exceptional efforts of the members of the committee, all of whom had many other responsibilities but who nonetheless generously gave much of their time and their expertise to the project. Robert M. Hauser, Chair Panel on Collecting, Storing, Accessing, and Protecting Biological Specimens and Biodata in Social Surveys

OCR for page R1
Contents Summary 1 1 Introduction 7 2 Collecting, Storing, Using, and Distributing Biospecimens 19 3 Protecting Privacy and Confidentiality: Sharing Digital Representations of Biological and Social Data 41 4 Informed Consent 55 5 Findings, Conclusions, and Recommendations 73 References 87 Appendixes A Agenda for the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys 93 B Participants in the Workshop on Collecting, Storing, Protecting, and Accessing Biological Data Collected in Social Surveys 97 C Biographical Sketches of Panel Members and Staff 99 D Acronyms 105 xi

OCR for page R1