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Record W2170332118 · doi:10.1186/gm317

Ethical, legal and social issues: out in the open

2012· article· en· W2170332118 on OpenAlexaboutno aff
Rebecca F. Furlong

Bibliographic record

VenueGenome Medicine · 2012
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsnot available
Fundersnot available
KeywordsGenomicsHuman geneticsOpen sciencePrecision medicineEngineering ethicsGenomic medicineCommercializationPersonalized medicineData scienceBioethicsEthical issuesIntellectual propertyField (mathematics)Computer sciencePolitical scienceLawBioinformaticsGenomeGeneticsBiologyEngineeringComputational biology

Abstract

fetched live from OpenAlex

The field of genomic medicine moves quickly, and previously unrealized ethical issues are becoming apparent as new technologies are invented, novel data emerge and clinical applications are established. In the three years since the launch of Genome Medicine, we have seen discussion panels at genomics conferences tackling such topics as return of research results to participants and physician education in the genomic era, while headlines have been made by the Genetic Information Nondiscrimination Act [1], the Myriad Genetics patent litigation [2], and the US Food and Drug Administration's take on direct-to-consumer testing[3]. Considerations of the ethical implications of genomic technologies and data are crucial to the implementation of genomic advances for improving human health. Work in the ethical, legal and social issues (ELSI) field does not always fit the standard Research article format, but broad, transparent access to these analyses and discussions is essential if they are to be integrated into the field of genomic medicine. In this issue of the journal, we introduce a peer-reviewed open-access article type, Open Debate, to accommodate novel and scholarly arguments that are informed by analysis and discussion, not just practical research. In the first article of this new type, Timothy Caulfield, Shawn Harmon and Yann Joly investigate the conflicts between open science and commercialization in genomics research [4]. Genomics has a culture of open data dating to before the time of the Human Genome Project, with the principles of accessibility formalized in the Bermuda agreement leading to an ongoing general principle that sequencing data should be released into the public domain as soon as possible after they are generated, and at least prior to publication. In the burgeoning field of medical sequencing, this principle has been tempered somewhat by considerations of patient privacy (a topic for another day), but as a rule, openness in genomics research continues to be both integral and essential. For example, it is hard to imagine how the recent explosion of genome-wide association studies, with their huge sample sizes, could have taken place without collaboration and data sharing. However, researchers are also increasingly encouraged to commercialize their research to speed product development and for monetary gain, which implies secrecy and competition. In their article, Caulfield and colleagues carry out an exploratory analysis of these two aspects of the policy guidelines from major funding bodies in the UK, US and Canada, concluding that these two opposing forces in genomics research may not be irreconcilable, but that a flexible middle way must be sought. In the spirit of openness and fostering debate, we encourage our readers to use the Comments facility available on our website, or tweet @genomemedicine, to join in the discussion. The transition to genomic medicine is dependent upon the participation of researchers, ethicists, lawyers, clinicians and patients, and we'd like to hear your views.

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 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)0.017
metaresearch head score (Gemma)0.008
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesResearch integrity
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Not applicable · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: none
Teacher disagreement score0.816
Threshold uncertainty score0.999

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0170.008
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0000.001
Scholarly communication0.0000.000
Open science0.0010.000
Research integrity0.0000.004
Insufficient payload (model declined to judge)0.0010.000

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 head0.595
GPT teacher head0.638
Teacher spread0.043 · 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 teacher head, not a consensus.

Study designNot applicable
Domainnot available
GenreEmpirical

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

Citations1
Published2012
Admission routes1
Has abstractyes

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