National Academies Press: OpenBook
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Rob bert Pool and Erin Rusch, Rapporteurs Round dtable on Env vironmental Health H Science es, Research h, and Medicin ne Board on Population He ealth and Pub blic Health Prractice Health and d Medicine D ivision

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by contracts between the National Academy of Sciences and the Colgate-Palmolive Company, the ExxonMobil Foundation, The Kresge Foundation, the National Institute of Environmental Health Sciences, and Royal Dutch Shell. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-37085-1 International Standard Book Number-10: 0-309-37085-X Digital Object Identifier: 10.17226/21703 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2016 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Principles and obstacles for sharing data from environmental health research: Workshop summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.

The National Acad demy of Sciences was esttablished in 11863 by an A Act of Conngress, signed d by Presidentt Lincoln, as a private, noongovernmenttal institu ution to advvise the natiion on issue es related to o science and technoology. Memb bers are ele ected by the eir peers fo or outstanding contribbutions to ressearch. Dr. Ralph R J. Cicerrone is preside ent. The National Acad demy of Engiineering wass established in 1964 undder the chharter of the National Aca ademy of Scie ences to bring the practicces of eng gineering to advising the nation. Mem mbers are ellected by the eir peers for extraordinary contribbutions to en ngineering. D Dr. C. D. Motte, Jr., is president. The Naational Acade emy of Medic cine (former ly the Institute of Medicin ne) was esstablished in 1970 under the charter o of the Nation nal Academy of Scienc ces to advise the nation on o medical aand health isssues. Membe ers are elected by the eir peers for distinguishedd contributions to medicine ealth. Dr. Victor J. Dzau iss president. and he The th hree Academ mies work toogether as th he National Academies of Sciencces, Engineering, and Medicine to provide independen nt, objecttive analysis and a advice too the nation aand conduct o other activitiies to solve complex problems an nd inform pu ublic policy decisions. TThe Academ mies also enc courage educaation and rese earch, recognnize outstandiing contrib butions to knoowledge, and increase pubblic understan nding in matteers of scie ence, engineering, and meddicine. Learn more about the t National Academies A off Sciences, En ngineering, and Mediciine at www.n national-acad demies.org.

PLANNING COMMITTEE FOR THE WORKSHOP ON PRINCIPLES AND OBSTACLES FOR SHARING DATA FROM ENVIRONMENTAL HEALTH RESEARCH1 ELLEN WRIGHT CLAYTON, Vanderbilt University, Nashville, TN DENNIS J. DEVLIN, ExxonMobil Corporation, Irving, TX LYNN R. GOLDMAN, George Washington University, Washington, DC BERNARD D. GOLDSTEIN, University of Pittsburgh, PA SUZETTE M. KIMBALL, U.S. Geological Survey, Reston, VA DAVID KORN, Harvard University, Cambridge, MA ALAN B. MORRISON, George Washington University, Washington, DC JEROME P. REITER, Duke University, Durham, NC JOSEPH V. RODRICKS, ENVIRON, Arlington, VA SUSAN L. SANTOS, Rutgers School of Public Health, Piscataway, NJ KIMBERLY THIGPEN TART, National Institute of Environmental Health Sciences, Research Triangle Park, NC 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. v

ROUNDTABLE ON ENVIRONMENTAL HEALTH SCIENCES, RESEARCH, AND MEDICINE1 FRANK LOY (Chair), Washington, DC LYNN R. GOLDMAN (Vice-Chair), George Washington University, Washington, DC HENRY A. ANDERSON, Wisconsin Division of Public Health, Madison JOHN M. BALBUS, National Institute of Environmental Health Sciences, Bethesda, MD JAMES K. BARTRAM, University of North Carolina at Chapel Hill FAIYAZ BHOJANI, Royal Dutch Shell, The Hague, Netherlands LINDA S. BIRNBAUM, National Institute of Environmental Health Sciences, Research Triangle Park, NC LUZ CLAUDIO, Mount Sinai School of Medicine, New York, NY DENNIS J. DEVLIN, ExxonMobil Corporation, Irving, TX RICHARD A. FENSKE, University of Washington, Seattle DAVID D. FUKUZAWA, The Kresge Foundation, Troy, MI LUIZ A. GALVÃO, Pan American Health Organization, Washington, DC BERNARD D. GOLDSTEIN, University of Pittsburgh, PA RICHARD J. JACKSON, University of California, Los Angeles SUZETTE M. KIMBALL, U.S. Geological Survey, Reston, VA JAY LEMERY, University of Colorado Denver ANDREW MAGUIRE, Environmental Defense Fund, Washington, DC LINDA A. MCCAULEY, Emory University, Atlanta, GA AL MCGARTLAND, U.S. Environmental Protection Agency, Washington, DC DAVID M. MICHAELS, Occupational Safety and Health Administration, Washington, DC CANICE NOLAN, European Commission, Brussels, Belgium CHRISTOPHER J. PORTIER, Centers for Disease Control and Prevention, Atlanta, GA PAUL SANDIFER, National Oceanic and Atmospheric Administration, Charleston, SC 1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution. vii

SUSAN L. SANTOS, Rutgers School of Public Health, Piscataway, NJ JOHN D. SPENGLER, Harvard School of Public Health, Boston, MA G. DAVID TILMAN, University of Minnesota, St. Paul PATRICIA VERDUIN, Colgate-Palmolive Company, Piscataway, NJ NSEDU OBOT WITHERSPOON, Children’s Environmental Health Network, Washington, DC HAROLD ZENICK, U.S. Environmental Protection Agency, Research Triangle Park, NC HMD Staff KATHLEEN STRATTON, Study Director ERIN RUSCH, Associate Program Officer (until May 8, 2015) HOPE HARE, Administrative Assistant ROSE MARIE MARTINEZ, Director, Board on Population Health and Public Health Practice viii

Reviewers This workshop summary has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published summary as sound as possible and to ensure that the summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary: Julia B. Brody, Silent Spring Institute James W. Conrad, Jr., Conrad Law and Policy Counsel Susan L. Santos, Rutgers University Christine Thayer, National Toxicology Office of Health Assessment Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this summary was overseen by Sue Curry, University of Iowa. She was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this summary rests entirely with the rapporteurs and the institution. ix

Contents 1 INTRODUCTION 1 Organization of the Summary, 2 2 CURRENT APPROACHES AND WEAKNESSES OF THOSE APPROACHES 5 Terminology, 5 Federal Laws and Policies Pertaining to Data Sharing, 8 Comments and Discussion, 14 Federal Agencies, 17 Comments and Discussion, 24 References, 27 3 THE BENEFITS OF DATA SHARING 29 Advances from Reproducible Research, 29 Allowing Verification of Results, 30 Improving the Science, 31 The Benefits of Megadata, 32 Comments and Discussion, 35 References, 38 4 ISSUES AND CHALLENGES ASSOCIATED WITH DATA SHARING 39 Obstacles to the Release of Data, 39 Privacy and Confidentiality Issues, 47 Informed-Consent Issues, 57 Comments and Discussion, 60 References, 66 5 POSSIBLE WAYS FORWARD 69 Ways to Increase Data Sharing, 69 Overall Reflections, 77 The Bigger Picture, 79 References, 82 xi

xii CONTENTS APPENDIXES A AGENDA 83 B SPEAKER BIOGRAPHICAL SKETCHES 89

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On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects—making them both transparent and accessible to others—raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.

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