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Record W2052976515 · doi:10.1007/s10897-013-9597-z

Does a Duty of Disclosure Foster Special Treatment of Genetic Research Participants?

2013· article· en· W2052976515 on OpenAlexafffund
Robin Z. Hayeems, Fiona A. Miller, Jessica Bytautas, Li Li

Bibliographic record

VenueJournal of Genetic Counseling · 2013
Typearticle
Languageen
FieldMedicine
TopicEthics and Legal Issues in Pediatric Healthcare
Canadian institutionsUniversity of Toronto
FundersCystic Fibrosis CanadaGenome Canada
KeywordsGenetic counselingPublic healthDutyPsychologyHuman geneticsClinical psychologyMedicinePsychiatryFamily medicineNursingGeneticsPolitical scienceBiology

Abstract

fetched live from OpenAlex

The principle that research participants not receive enhanced care compared to non-participants may be challenged by a duty to disclose genetic research results, especially where care is otherwise inaccessible. Autism researchers' attitudes toward providing enhanced care to study participants were analyzed quantitatively using descriptive and multivariate analyses of survey data and qualitatively through thematic analysis of interview data. Approximately half of survey respondents (n = 168, RR = 44 %) agreed they should provide additional knowledge (52 %) or services (48 %) to study participants that may not be available to non-participants. Qualitatively (n = 23), respondents were motivated by the notion of reciprocity but highlighted tensions when research enables access to expertise and therapeutic resources that are otherwise difficult to obtain. For researchers, feeling obliged to report research results may be in conflict with the obligation to avoid special treatment of research participants; this may in turn threaten principles of voluntariness, autonomy, and justice.

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)0.190
metaresearch head score (Gemma)0.333
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Theoretical or conceptual · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.190
Threshold uncertainty score0.998

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.1900.333
Meta-epidemiology (narrow)0.0000.001
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0010.001
Science and technology studies0.0070.024
Scholarly communication0.0060.009
Open science0.0020.009
Research integrity0.0050.006
Insufficient payload (model declined to judge)0.0020.000

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 head0.102
GPT teacher head0.417
Teacher spread0.315 · 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
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

Citations7
Published2013
Admission routes2
Has abstractyes

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