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Record W4414716377 · doi:10.1016/j.gim.2025.101594

Toward ethical provenance tracking: The GA4GH model data access agreement (DAA)

2025· article· en· W4414716377 on OpenAlexaff
Alexander Bernier, Bartha Maria Knoppers, Jonathan Lawson, Robyn McDougall, Maili Raven-Adams, Vasiliki Rahimzadeh

Bibliographic record

VenueGenetics in Medicine · 2025
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsMcGill UniversityLeukemia & Lymphoma Society of CanadaMcGill University Health CentreUniversity of Toronto
FundersNational Human Genome Research InstituteNational Institutes of Health
KeywordsData accessSoftwareCompliance (psychology)ProvenanceGenetic dataData Protection Act 1998Data model (GIS)Health Insurance Portability and Accountability ActHuman rights

Abstract

fetched live from OpenAlex

PURPOSE: Standardizing contractual clauses that govern data access enables research institutions to responsibly steward genomic and related health data while enabling its efficient downstream reuse. METHODS: We describe a document analysis study using both qualitative and comparative law analytical approaches to identify the most common categories of clauses from 29 different data access agreements used by human biomedical research consortia globally. We furthermore characterized the legal positions and standard practices for each common element of the agreement and synthesized across them to develop model clauses. A total of 3 discussion sessions were organized virtually to refine the clauses among members of the Ethical Provenance Subgroup of the Global Alliance for Genomics and Health. RESULTS: We developed 15 unique data access clauses corresponding to the most common legal elements identified in the sampled agreements. CONCLUSION: Model clauses can be used to drive administrative efficiencies and institutional compliance for managing access to human genomic data for research. Additional machine-readable consents and software solutions are needed to support traceable "ethical provenance" of human genomic data and communicate data use conditions throughout the data's life-cycle.

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)0.258
metaresearch head score (Gemma)0.280
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Research integrity
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Theoretical or conceptual · Consensus signal: Theoretical or conceptual
GenreCandidate signal: Methods · Consensus signal: Methods
Teacher disagreement score0.994
Threshold uncertainty score0.915

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.2580.280
Meta-epidemiology (narrow)0.0010.001
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0050.005
Science and technology studies0.0090.022
Scholarly communication0.0180.023
Open science0.0040.014
Research integrity0.0060.008
Insufficient payload (model declined to judge)0.0030.001

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 head0.820
GPT teacher head0.671
Teacher spread0.149 · 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 designTheoretical or conceptual
Domainnot available
GenreMethods

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

Citations0
Published2025
Admission routes1
Has abstractyes

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