Data Matters: Ethics, Data, and International Research Collaboration in a Changing World: Proceedings of a Workshop (2018)
Chapter: Front Matter
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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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
Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; Internet, http://www.nap.edu/.
Copyright 2018 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. 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.
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.
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 National 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.nationalacademies.org.
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.
For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.
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
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
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.
This page intentionally left blank.
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 |
This page intentionally left blank.
Contents
Examples of Multinational Collaborations
Conflict between Publication and Privacy
2 PRIVACY, SECURITY, AND CONFIDENTIALITY OF DATA SHARING AND STORAGE
The Upside and Downside: Protections, Incentives, Disincentives, and Risks
Political and Economic Concerns
Communications and Space Science
Earth, Space, and Environmental Sciences
U.S. Government Statistical Data
Engaging in Good Data Management Practices
Sharing Responsibly: Data Ethics in Practice
Equity, Sustainability, and Privacy
Domination or Dependence for Data Collaboration in Africa
Perspectives on Data, Cities, and Resilience
3 EMERGING TECHNOLOGIES AND THE SOCIAL LANDSCAPE
The Internet of People and Things
4 REPORTS FROM THE BREAKOUT SESSIONS
