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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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DATA MATTERS

Ethics, Data, and International Research
Collaboration in a Changing World

PROCEEDINGS OF A WORKSHOP

Susan Sauer Sloan and Joe Alper, Rapporteurs

Planning Committee for the Workshop on Ethics, Data, and
International Research Collaboration in a Changing World

Government-University-Industry Research Roundtable
Policy and Global Affairs

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This project was supported by the Department of Defense/Office of Naval Research award #N00014-17-D-4001/N00014-17-F-1003; the National Institutes of Health IDIQ HHSN263201200074I, Task Order HHSN26300078; the Office of the Director of National Intelligence; the United States Department of Agriculture award 2015-38886-24019; and GUIRR University-Industry Partners. 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.

International Standard Book Number – 13: 978-0-309-48247-9
International Standard Book Number – 10: 0-309-48247-X
Digital Object Identifier: https://doi.org/10.17226/25214

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: http://doi.org/10.17226/25214.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

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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. Marcia McNutt is president.

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

PLANNING COMMITTEE FOR THE WORKSHOP ON ETHICS, DATA, AND INTERNATIONAL RESEARCH COLLABORATION IN A CHANGING WORLD

BARBARA B. MITTLEMAN (Co-Chair), Chief Strategy Officer and Vice Chair, WayMark Systems, Inc.

ARTURO PIZANO (Co-Chair), Program Manager for University Relations, Siemens Corporation

TILAK AGERWALA, Retired Vice President, IBM Thomas J. Watson Research Center

RUXANDRA DRAGHIA, Vice President of Public Health and Scientific Affairs, Merck Global Vaccines

RACHELLE HOLLANDER, Senior Advisor Emeritus, Center for Engineering Ethics and Society

ANDREAS RECHKEMMER, Professor and Humane Endowed Chair, University of Denver

SUSAN SAUER SLOAN, Staff Officer, National Research Council

Principal Project Staff

SUSAN SAUER SLOAN, Rapporteur and Director, Government-University-Industry Research Roundtable

MEGAN NICHOLSON, Program Officer, Government-University-Industry Research Roundtable

CLAUDETTE K. BAYLOR-FLEMING, Administrative Coordinator, Government-University-Industry Research Roundtable, and the Federal Demonstration Partnership

SHIERRA RAMIREZ, Financial Associate, Policy and Global Affairs Division

JOE ALPER, Consultant Writer

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

WORKING GROUP ON INTERNATIONAL RESEARCH COLLABORATIONS (I-GROUP)

FRAN BERMAN, Rensselaer Polytechnic Institute

ALEXIS BONNELL, U.S. Agency for International Development

SANDRA BROWN, University of California, San Diego

GIULIO BUSULINI, Embassy of Italy

JOHN CARFORA, Loyola Marymount University

JAMES CASEY, Attorney and R&D Specialist

SUBHA CHANDRASEKHARAN, HealthEnabled

GIULIA DEL BRENNA, European Commission

LORNA JEAN EDMONDS, Ohio University

BRAD FENWICK, Elsevier

KARIN GICHUHI, U.S. Agency for International Development

MARY JORDAN, U.S. Agency for International Development

ELIZABETH LYONS, National Science Foundation

MARTIN MARGALA, University of Massachusetts Lowell

NAFIZ KARABUDAK, Lockheed Martin Corporation

ANDREW REYNOLDS, University of Virginia

BETTINA SCHUFFERT, German Research Foundation (DFG)

CAROLY SHUMWAY, U.S. Agency for International Development

CARRIE STOKES, U.S. Agency for International Development

DAVID STONNER, National Science Foundation (retired)

KATHRYN SULLIVAN, National Science Foundation

JUDITH TORNEY-PURTA, University of Maryland

ANNICA WAYMAN, U.S. Agency for International Development

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

Acknowledgement of Reviewers

This Proceedings of a Workshop was reviewed in draft form by individuals 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 National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.

We thank the following individuals for their review of this proceedings: Takehito Kamata, University of Minnesota; Bartha Knoppers, McGill University; Shalini Mohleji, IBM; and James Reecy, Iowa State University.

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by Alexa McCray, Harvard Medical School. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

Acronyms and Abbreviations

AGU American Geophysical Union
AOL America Online
COPDESS Coalition for Publishing Data in the Earth and Space Sciences
DARPA Defense Advanced Research Project Agency
ESGF Earth System Grid Federation
GA4GH Global Alliance for Genomics and Health
GDPR General Data Protection Regulations
GEO Group on Earth Observations
GEOSS Global Earth Observing System of Systems
GNCR Great North Care Record
GUIRR Government-University-Industry Research Roundtable
HIPAA Health Insurance Portability and Accountability Act
I-Group Working Group on International Research Collaborations
ICSU International Council for Science
IoT Internet of Things
IRB Institutional review board
METADAC Managing Ethico-social, Technical, and Administrative Issues in Data Access
OECD Organisation for Economic Co-operation and Development
SIDS Small island developing states
WMO World Meteorological Organization
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×

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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
×
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25214.
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Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop Get This Book
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In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training.

International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated data—this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well.

A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domains—all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.

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