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Record W2076005227 · doi:10.1038/ejhg.2014.197

International Charter of principles for sharing bio-specimens and data

2014· article· en· W2076005227 on OpenAlexafffund
Deborah Mascalzoni, Edward S. Dove, Yaffa Rubinstein, Hugh Dawkins, Anna Kole, Pauline McCormack, Simon Woods, Olaf Rieß, Franz Schaefer, Hanns Lochmüller, Bartha Maria Knoppers, Mats Hansson

Bibliographic record

VenueEuropean Journal of Human Genetics · 2014
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsMcGill University
FundersMedical Research CouncilInnovative Medicines InitiativeVetenskapsrådetGovernment of CanadaNational Health and Medical Research CouncilEuropean CommissionFondation du cancer du sein du QuébecGénome QuébecCanadian Institutes of Health ResearchGenome Canada
KeywordsCharterData sharingNegotiationExploitStakeholderSample (material)Knowledge managementObstacleComputer scienceBusinessData sciencePolitical sciencePublic relationsComputer securityMedicineLaw

Abstract

fetched live from OpenAlex

There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term value and exploit their potential for health discovery and validation. This is especially evident for rare disease research. Currently, the rising value of data and bio-specimen collections does not correspond with an equal increase in data/sample-sharing and data/sample access. Contradictory legal and ethical frameworks across national borders are obstacles to effective sharing: more specifically, the absence of an integrated model proves to be a major logistical obstruction. The Charter intends to amend the obstacle by providing both the ethical foundations on which data sharing should be based, as well as a general Material and Data Transfer Agreement (MTA/DTA). This Charter is the result of a careful negotiation of different stakeholders' interest and is built on earlier consensus documents and position statements, which provided the general international legal framework. Further to this, the Charter provides tools that may help accelerate sharing. The Charter has been formulated to serve as an enabling tool for effective and transparent data and bio-specimen sharing and the general MTA/DTA constitutes a mechanism to ensure uniformity of access across projects and countries, and may be regarded as a consistent basic agreement for addressing data and material sharing globally. The Charter is forward looking in terms of emerging issues from the perspective of a multi-stakeholder group, and where possible, provides strategies that may address these issues.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.184
metaresearch head score (Gemma)0.132
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Open science
Consensus categoriesnone
DomainCandidate signal: Reproducibility · Consensus signal: none
Study designCandidate signal: Not applicable · Consensus signal: none
GenreCandidate signal: Other · Consensus signal: Other
Teacher disagreement score0.994
Threshold uncertainty score0.974

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.1840.132
Meta-epidemiology (narrow)0.0020.002
Meta-epidemiology (broad)0.0020.003
Bibliometrics0.0040.005
Science and technology studies0.0090.022
Scholarly communication0.0260.010
Open science0.0060.009
Research integrity0.0200.029
Insufficient payload (model declined to judge)0.0050.004

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.601
GPT teacher head0.544
Teacher spread0.057 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

Study designNot applicable
DomainReproducibility
GenreOther

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations156
Published2014
Admission routes2
Has abstractyes

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