Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum
Author:
Bernier Alexander1ORCID, Knoppers Bartha M1, Bermudez Patrick2ORCID, Beauvais Michael J S3, Thorogood Adrian4ORCID, Behan Brendan, Bellec Pierre, Brown Shawn, Bujold David, Cavoukian Ann, Clarkson John, Das Samir, Dessureault Emilie, Dharsee Moyez, Dickie Erin, Duchesne Simon, Dyke Stephanie, Evans Ken, Evans Alan, Flynn Jennifer, Forkert Nils, Gee Tom, Glatard Tristan, Gold Richard, Harding Rachel, Henriques Felipe, Hill Sean, Illes Judy, Karamchandani Jason, Khan Ali, Kiar Greg, Maria Knoppers Bartha, Lecours Xavier, Legault Melanie, MacFarlane Dave, Madjar Cécile, Nadler Roland, Paiva Santiago, Pavlidis Paul, Poline Jean-Baptiste, Rotenberg David, Rousseau Marc-Etienne, Stewart Walter, Stikov Nikola, Theriault Elizabeth, Evans Alan2ORCID,
Affiliation:
1. 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 2. McGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University , Montréal, Québec H3A 2B4 , Canada 3. Faculty of Law, University of Toronto , Falconer Hall, 84 Queens Park, Toronto, Ontario M5S 2C5 , Canada 4. The Terry Fox Research Institute , 110 Pine Ave W, Montreal, Quebec H2W IR7 , Canada
Abstract
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.
Funder
Brain Canada Platform
Publisher
Oxford University Press (OUP)
Subject
Computer Science Applications,Health Informatics
Reference32 articles.
1. Data sharing;Gilmore,2021
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