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Record W2024726260 · doi:10.1038/ejhg.2014.143

Scientists’ perspectives on consent in the context of biobanking research

2014· article· en· W2024726260 on OpenAlexafffund
Zubin Master, Lisa Campo‐Engelstein, Timothy Caulfield

Bibliographic record

VenueEuropean Journal of Human Genetics · 2014
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsUniversity of Alberta
FundersGenome AlbertaAlberta InnovatesFondation pour la Recherche MédicaleGovernment of CanadaGenome CanadaOntario GenomicsOntario Genomics Institute
KeywordsBiobankInformed consentBioethicsContext (archaeology)Research ethicsEngineering ethicsQualitative researchLimitingPsychologyMedicinePublic relationsPolitical scienceAlternative medicineLawSociologyBioinformaticsPathologySocial scienceEngineering

Abstract

fetched live from OpenAlex

Most bioethics studies have focused on capturing the views of patients and the general public on research ethics issues related to informed consent for biobanking and only a handful of studies have examined the perceptions of scientists. Capturing the opinions of scientists is important because they are intimately involved with biobanks as collectors and users of samples and health information. In this study, we performed interviews with scientists followed by qualitative analysis to capture the diversity of perspectives on informed consent. We found that the majority of scientists in our study reported their preference for a general consent approach although they do not believe there to be a consensus on consent type. Despite their overall desire for a general consent model, many reported several concerns including donors needing some form of assurance that nothing unethical will be done with their samples and information. Finally, scientists reported mixed opinions about incorporating exclusion clauses in informed consent as a means of limiting some types of contentious research as a mechanism to assure donors that their samples and information are being handled appropriately. This study is one of the first to capture the views of scientists on informed consent in biobanking. Future studies should attempt to generalize findings on the perspectives of different scientists on informed consent for biobanking.

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)0.280
metaresearch head score (Gemma)0.277
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesMetaresearch
DomainCandidate signal: Methods · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: none
Teacher disagreement score0.720
Threshold uncertainty score0.888

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.2800.277
Meta-epidemiology (narrow)0.0010.001
Meta-epidemiology (broad)0.0020.002
Bibliometrics0.0030.003
Science and technology studies0.0210.131
Scholarly communication0.0280.022
Open science0.0050.016
Research integrity0.0640.055
Insufficient payload (model declined to judge)0.0040.001

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 head0.645
GPT teacher head0.594
Teacher spread0.052 · 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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.

Study designQualitative
DomainMethods
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

Citations56
Published2014
Admission routes2
Has abstractno

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