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Record W2885437164 · doi:10.1007/s00439-018-1919-7

International data-sharing norms: from the OECD to the General Data Protection Regulation (GDPR)

2018· review· en· W2885437164 on OpenAlex

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.

Bibliographic record

VenueHuman Genetics · 2018
Typereview
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsMcGill University
FundersWYNG Foundation
KeywordsData sharingCustodiansData Protection Act 1998Context (archaeology)General Data Protection RegulationData sciencePolitical scienceComputer scienceBiologyLawMedicine

Abstract

fetched live from OpenAlex

The evolution of genomic research and its integration into clinical practice, as they become international-even global-endeavors, has brought us to a place where scientists and clinicians may now only ignore the rules governing international data sharing at their own peril. Open data policies, on the one hand, increasingly require custodians of others' genomic data to make it as widely available as feasible, including to researchers in other countries. Data protection law, on the other, has become a significant hurdle to the sharing of personal data across jurisdictional borders. The space between these two competing duties is narrowing. In contrast with the other texts in this volume, which explore the present and future of data sharing and data protection, this article's focus is on the past. It centres on the historical development of the data protection rules regarding the international transfer of personal data up to the present. The article's aim is to bring into focus the underlying objectives that have influenced and that will continue to influence the way that data protection rules are applied to the fields of genomics and health, as well as future developments in data protection generally. The first part of this article describes the development of international data-sharing data protection rules since 1970. The second considers difficulties in applying general data protection rules to the specific context of genomics and health. The third and final part compares the options available to comply with the international transfer restrictions set out in the standard-setting EU General Data Protection Regulation from a genomics perspective.

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.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.006
metaresearch head score (Gemma)0.005
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesOpen science, Insufficient payload (model declined to judge)
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Not applicable · Consensus signal: none
GenreCandidate signal: Review · Consensus signal: Review
Teacher disagreement score0.929
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0060.005
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0070.008
Research integrity0.0010.002
Insufficient payload (model declined to judge)0.0010.001

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 head0.895
GPT teacher head0.660
Teacher spread0.235 · 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