Neuroscience Data
in the Cloud
Opportunities and Challenges
PROCEEDINGS OF A WORKSHOP
Lisa Bain, Amanda Wagner Gee, and Clare Stroud, Rapporteurs
Forum on Neuroscience and Nervous System Disorders
Board on Health Sciences Policy
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
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 Alzheimer’s Association; Cohen Veterans Bioscience; Department of Health and Human Services’ Food and Drug Administration (5R13FD005362-05) and National Institutes of Health (NIH) (75N98019F00769 [Under Master Base HHSN263201800029I]) through the National Center for Complementary and Integrative Health, National Eye Institute, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, and NIH Blueprint for Neuroscience Research; Department of Veterans Affairs (VA240-14-C-0057); Eisai Inc.; Eli Lilly and Company; Foundation for the National Institutes of Health; Gatsby Charitable Foundation; Janssen Research & Development, LLC; The Kavli Foundation; Lundbeck Research USA; Merck Research Laboratories; The Michael J. Fox Foundation for Parkinson’s Research; National Multiple Sclerosis Society; National Science Foundation (BCS-1064270); One Mind; Sanofi; Society for Neuroscience; Takeda Pharmaceuticals International, Inc.; The University of Rhode Island; and Wellcome Trust. 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: 978-0-309-67055-5
International Standard Book Number-10: 0-309-67055-1
Digital Object Identifier: https://doi.org/10.17226/25653
Additional copies of this publication 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 2020 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. 2020. Neuroscience data in the cloud: Opportunities and challenges: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/25653.
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PLANNING COMMITTEE ON NEUROSCIENCE DATA IN THE CLOUD1
DEANNA BARCH (Co-Chair), Washington University in St. Louis
MICHAEL HUERTA (Co-Chair), National Library of Medicine, National Institutes of Health
AMIEE ALOI, Gates Ventures
ROSA CANET-AVILÉS, Foundation for the National Institutes of Health
JONATHAN COHEN, Princeton University
PATRICK CULLINAN, bluebird bio
GREGORY FARBER, National Institute of Mental Health
DANIEL GESCHWIND, University of California, Los Angeles
MAGALI HAAS, Cohen Veterans Bioscience
MICHAEL HAWRYLYCZ, Allen Institute for Brain Science
STUART HOFFMAN, Department of Veterans Affairs
MICHAEL MILHAM, Child Mind Institute
KARLA MILLER, University of Oxford
BENJAMIN NEALE, Massachusetts General Hospital; Broad Institute
KRISTEN ROSATI, Coppersmith Brockelman, PLC
LUBA SMOLENSKY, The Michael J. Fox Foundation for Parkinson’s Research
MARGARET SUTHERLAND, Chan Zuckerberg Initiative
Health and Medicine Division Staff
CLARE STROUD, Director, Forum on Neuroscience and Nervous System Disorders
SHEENA M. POSEY NORRIS, Program Officer
PHOENIX WILSON, Senior Program Assistant
ANDREW M. POPE, Senior Director, Board on Health Sciences Policy
___________________
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 Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
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FORUM ON NEUROSCIENCE AND NERVOUS SYSTEM DISORDERS1
FRANCES JENSEN (Co-Chair), University of Pennsylvania
JOHN KRYSTAL (Co-Chair), Yale University
SUSAN AMARA, Society for Neuroscience
RITA BALICE-GORDON, Sanofi
KATJA BROSE, Chan Zuckerberg Initiative
EMERY BROWN, Harvard Medical School and Massachusetts Institute of Technology
DANIEL BURCH, Pharmaceutical Product Development, LLC
JOSEPH BUXBAUM, Icahn School of Medicine at Mount Sinai
SARAH CADDICK, Gatsby Charitable Foundation
ROSA CANET-AVILÉS, Foundation for the National Institutes of Health
MARIA CARRILLO, Alzheimer’s Association
EDWARD CHANG, University of California, San Francisco
TIMOTHY COETZEE, National Multiple Sclerosis Society
JONATHAN COHEN, Princeton University
ROBERT CONLEY, Eli Lilly and Company
JAMES DESHLER, National Science Foundation
BILLY DUNN, Food and Drug Administration
MICHAEL EGAN, Merck Research Laboratories
NITA FARAHANY, Duke University School of Law
JOSHUA GORDON, National Institute of Mental Health
RAQUEL GUR, University of Pennsylvania
MAGALI HAAS, Cohen Veterans Bioscience
RAMONA HICKS, One Mind
RICHARD HODES, National Institute on Aging
STUART HOFFMAN, Department of Veterans Affairs
JONATHAN HORSFORD, National Institute of Dental and Craniofacial Research
YASMIN HURD, Icahn School of Medicine at Mount Sinai
STEVEN HYMAN, Broad Institute of Massachusetts Institute of Technology and Harvard University
MICHAEL IRIZARRY, Eisai Inc.
GEORGE KOOB, National Institute on Alcohol Abuse and Alcoholism
WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke
___________________
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 Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
STORY LANDIS, National Institute of Neurological Disorders and Stroke (Director Emeritus)
ALAN LESHNER, American Association for the Advancement of Science (Emeritus)
HUSSEINI MANJI, Janssen Research & Development, LLC
CAROLINE MONTOJO, The Kavli Foundation
STEVEN PAUL, Voyager Therapeutics, Inc.
EMILIANGELO RATTI, Takeda Pharmaceuticals International, Inc.
TODD SHERER, The Michael J. Fox Foundation for Parkinson’s Research
DAVID SHURTLEFF, National Center for Complementary and Integrative Health
SANTA TUMMINIA, National Eye Institute
NORA VOLKOW, National Institute on Drug Abuse
ANDREW WELCHMAN, Wellcome Trust
DOUG WILLIAMSON, Lundbeck
STEVIN ZORN, MindImmune Therapeutics, Inc.
Health and Medicine Division Staff
CLARE STROUD, Forum Director
SHEENA M. POSEY NORRIS, Program Officer
AMANDA WAGNER GEE, Program Officer
PHOENIX WILSON, Senior Program Assistant
BARDIA MASSOUDKHAN, Financial Business Partner
ANDREW M. POPE, Senior Director, Board on Health Sciences Policy
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:
SEAN HILL, Centre for Addiction and Mental Health
REBECCA LI, Vivli
MARYANN MARTONE, University of California, San Diego
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 LUCILA OHNO-MACHADO, University of California, San Diego. 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.
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Contents
2 HARNESSING CLOUD-BASED TECHNOLOGIES TO ADVANCE NEUROSCIENCE RESEARCH: SELECT CURRENT INITIATIVES
International Neuroscience Coordinating Facility
PART 1
CLOUD-BASED TECHNOLOGIES FOR NEUROSCIENCE RESEARCH: CHALLENGES AND POTENTIAL SOLUTIONS
3 PROTECTING PRIVACY IN THE CLOUD
Current Promising Practices to Protect Privacy
Key Privacy-Related Issues to Be Resolved
4 MANAGING DATA AND PROMOTING INTEROPERABILITY IN THE CLOUD
Current Promising Practices Regarding Standards Development and Interoperability
5 ASSIGNING CREDIT, DETERMINING OWNERSHIP, AND LICENSING DATA IN THE CLOUD
Current Promising Practices for Assigning Credit and Licensing Data
Credit, Ownership, and Licensing Issues to Be Resolved
6 GOVERNING, FUNDING, AND SUSTAINING CLOUD-BASED PLATFORMS
Current Promising Practices for Data Governance in the Cloud
PART 2
DIFFERENT TYPES OF NEUROSCIENCE DATA: CHALLENGES AND POTENTIAL OPPORTUNITIES
7 CLINICAL TRIAL AND RESEARCH DATA
Current Promising Practices in Clinical Trial and Research Data Sharing
Issues to Be Resolved for Sharing Clinical Trial and Research Data
Current Promising Practices for Managing Genetic Data in the Cloud
Issues to Be Resolved Regarding Genetic Data in the Cloud
Current Promising Practices for Neuroimaging Data in the Cloud
Issues to Be Resolved to Advance Cloud-Based Neuroimaging Data Resources
Current Promising Practices for Managing Real-World Data in the Cloud
Issues to Be Resolved to Incorporate Real-World Data into Clinical Studies
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