Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.
| Title: | Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum. |
|---|---|
| Authors: | Bernier A; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, 740, Dr Penfield Ave, suite 5200, Montréal, Québec H3A 0G1, Canada.; Knoppers BM; Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, McGill University, 740, Dr Penfield Ave, suite 5200, Montréal, Québec H3A 0G1, Canada.; Bermudez P; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, Québec H3A 2B4, Canada.; Beauvais MJS; Faculty of Law, University of Toronto, Falconer Hall, 84 Queens Park, Toronto, Ontario M5S 2C5, Canada.; Thorogood A; The Terry Fox Research Institute, 110 Pine Ave W, Montreal, Quebec H2W IR7, Canada.; Evans A; McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, Québec H3A 2B4, Canada. |
| Corporate Authors: | CONP Consortium |
| Source: | GigaScience [Gigascience] 2024 Jan 02; Vol. 13. |
| Publication Type: | Journal Article; Research Support, Non-U.S. Gov't |
| Language: | English |
| Journal Info: | Publisher: Oxford University Press Country of Publication: United States NLM ID: 101596872 Publication Model: Print Cited Medium: Internet ISSN: 2047-217X (Electronic) Linking ISSN: 2047217X NLM ISO Abbreviation: Gigascience Subsets: MEDLINE |
| Imprint Name(s): | Publication: 2017- : New York : Oxford University Press; Original Publication: London : BioMed Central |
| MeSH Terms: | Biomedical Research*; Humans ; Gardens ; Canada ; Informed Consent ; Biological Specimen Banks |
| Abstract: | 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.; (© The Author(s) 2024. Published by Oxford University Press GigaScience.) |
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| Grant Information: | Brain Canada Platform |
| Contributed Indexing: | Investigator: B Behan; P Bellec; S Brown; D Bujold; A Cavoukian; J Clarkson; S Das; E Dessureault; M Dharsee; E Dickie; S Duchesne; S Dyke; K Evans; A Evans; J Flynn; N Forkert; T Gee; T Glatard; R Gold; R Harding; F Henriques; S Hill; J Illes; J Karamchandani; A Khan; G Kiar; B Maria Knoppers; X Lecours; M Legault; D MacFarlane; C Madjar; R Nadler; S Paiva; P Pavlidis; JB Poline; D Rotenberg; ME Rousseau; W Stewart; N Stikov; E Theriault |
| Entry Date(s): | Date Created: 20240113 Date Completed: 20240115 Latest Revision: 20250104 |
| Update Code: | 20260130 |
| PubMed Central ID: | PMC10787360 |
| DOI: | 10.1093/gigascience/giad114 |
| PMID: | 38217404 |
| Database: | MEDLINE |
Journal Article; Research Support, Non-U.S. Gov't