Evidence map›Paper›PMID 38217404›Full record

ArticleGigaScience2024

Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.

Alexander Bernier, Bartha M Knoppers, Patrick Bermudez, Michael J S Beauvais, Adrian Thorogood, CONP Consortium, Alan Evans

Abstract read
In one paragraph

Article in GigaScience, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Alexander BernierCentre 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.ORCID 0000-0001-8615-8375
Bartha M KnoppersCentre 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.
Patrick BermudezMcGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, Québec H3A 2B4, Canada.ORCID 0000-0002-0806-7352
Michael J S BeauvaisFaculty of Law, University of Toronto, Falconer Hall, 84 Queens Park, Toronto, Ontario M5S 2C5, Canada.
Adrian ThorogoodThe Terry Fox Research Institute, 110 Pine Ave W, Montreal, Quebec H2W IR7, Canada.ORCID 0000-0001-5078-8164
CONP Consortium
Alan EvansMcGill Centre for Integrative Neuroscience, Montreal Neurological Institute, McGill University, Montréal, Québec H3A 2B4, Canada.ORCID 0000-0003-3841-6098

Funding

Brain Canada Platform
6 · The paper itself

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.

Indexed as

Biomedical ResearchBiological Specimen BanksCanadaGardensHumansInformed Consent

Identifiers

PMID38217404
PMCPMC10787360

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.