Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum Article Swipe
Alexander Bernier
,
Bartha Maria Knoppers
,
Patrick Bermudez
,
Michael J. S. Beauvais
,
Adrian Thorogood
,
Brendan Behan
,
Pierre Bellec
,
Shawn T. Brown
,
David Bujold
,
Ann Cavoukian
,
P. John Clarkson
,
Samir Das
,
Emilie Dessureault
,
Moyez Dharsee
,
Erin W. Dickie
,
Simon Duchesne
,
Stephanie O. M. Dyke
,
Kenneth Evans
,
Alan C. Evans
,
Jennifer Flynn
,
Nils D. Forkert
,
Tom Gee
,
Tristan Glatard
,
E. Richard Gold
,
Rachel Harding
,
Felipe Henriques
,
Sean Hill
,
Judy Illes
,
Jason Karamchandani
,
Ali R. Khan
,
Greg Kiar
,
Bartha Maria Knoppers
,
Xavier Lecours
,
Mélanie Legault
,
D.R. MacFarlane
,
Cécile Madjar
,
Roland Nadler
,
Santiago Paiva
,
Paul Pavlidis
,
Jean‐Baptiste Poline
,
David Rotenberg
,
Marc-Étienne Rousseau
,
Walter A. Stewart
,
Nikola Stikov
,
Elizabeth Theriault
,
Alan C. Evans
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1093/gigascience/giad114
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1093/gigascience/giad114
Scientific research communities pursue dual imperatives in implementing strategies to share their data. These communities attempt to maximize the accessibility of biomedical data for downstream research use, in furtherance of open science objectives. Simultaneously, such communities safeguard the interests of research participants through data stewardship measures and the integration of suitable risk disclosures to the informed consent process. The Canadian Open Neuroscience Platform (CONP) convened an Ethics and Governance Committee composed of experts in bioethics, neuroethics, and law to develop holistic policy tools, organizational approaches, and technological supports to align the open governance of data with ethical and legal norms. The CONP has adopted novel platform governance methods that favor full data openness, legitimated through the use of robust deidentification processes and informed consent practices. The experience of the CONP is articulated as a potential template for other open science efforts to further build upon. This experience highlights informed consent guidance, deidentification practices, ethicolegal metadata, platform-level norms, and commercialization and publication policies as the principal pillars of a practicable approach to the governance of open data. The governance approach adopted by the CONP stands as a viable model for the broader neuroscience and open science communities to adopt for sharing data in full open access.
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- https://doi.org/10.1093/gigascience/giad114
- https://academic.oup.com/gigascience/article-pdf/doi/10.1093/gigascience/giad114/55674685/giad114.pdf
- OA Status
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- OpenAlex ID
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https://openalex.org/W4390842479Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1093/gigascience/giad114Digital Object Identifier
- Title
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Open Data Governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the ArboretumWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
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2024-01-01Full publication date if available
- Authors
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Alexander Bernier, Bartha Maria Knoppers, Patrick Bermudez, Michael J. S. Beauvais, Adrian Thorogood, Brendan Behan, Pierre Bellec, Shawn T. Brown, David Bujold, Ann Cavoukian, P. John Clarkson, Samir Das, Emilie Dessureault, Moyez Dharsee, Erin W. Dickie, Simon Duchesne, Stephanie O. M. Dyke, Kenneth Evans, Alan C. Evans, Jennifer Flynn, Nils D. Forkert, Tom Gee, Tristan Glatard, E. Richard Gold, Rachel Harding, Felipe Henriques, Sean Hill, Judy Illes, Jason Karamchandani, Ali R. Khan, Greg Kiar, Bartha Maria Knoppers, Xavier Lecours, Mélanie Legault, D.R. MacFarlane, Cécile Madjar, Roland Nadler, Santiago Paiva, Paul Pavlidis, Jean‐Baptiste Poline, David Rotenberg, Marc-Étienne Rousseau, Walter A. Stewart, Nikola Stikov, Elizabeth Theriault, Alan C. EvansList of authors in order
- Landing page
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https://doi.org/10.1093/gigascience/giad114Publisher landing page
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https://academic.oup.com/gigascience/article-pdf/doi/10.1093/gigascience/giad114/55674685/giad114.pdfDirect link to full text PDF
- Open access
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YesWhether a free full text is available
- OA status
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goldOpen access status per OpenAlex
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https://academic.oup.com/gigascience/article-pdf/doi/10.1093/gigascience/giad114/55674685/giad114.pdfDirect OA link when available
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Open science, Open data, Citizen science, Data science, World Wide Web, Computer science, Neuroscience, Biology, Botany, Physics, AstronomyTop concepts (fields/topics) attached by OpenAlex
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3Total citation count in OpenAlex
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2025: 1, 2024: 1, 2023: 1Per-year citation counts (last 5 years)
- References (count)
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28Number of works referenced by this work
- Related works (count)
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10Other works algorithmically related by OpenAlex
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