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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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Principles and Obstacles
for Sharing Data from
Environmental Health Research

Workshop Summary

Robert Pool and Erin Rusch, Rapporteurs

Roundtable on Environmental Health Sciences, Research, and Medicine

Board on Population Health and Public Health Practice

Health and Medicine Division

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THE NATIONAL ACADEMIES PRESS

Washington, DC

www.nap.edu

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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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.

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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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.

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.
×

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.

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.
×

This page intentionally left blank.

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.
×

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.

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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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

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.
×

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.

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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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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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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