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Record W2102981370 · doi:10.1136/jme.2010.040097

Assessment of children's capacity to consent for research: a descriptive qualitative study of researchers' practices: Table 1

2011· article· en· W2102981370 on OpenAlexaffabout
Barbara E. Gibson, Elaine Stasiulis, Shawna Gutfreund, Maria McDonald, Lauren A. Dade

Bibliographic record

VenueJournal of Medical Ethics · 2011
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsHolland Bloorview Kids Rehabilitation HospitalHospital for Sick ChildrenUniversity of Toronto
Fundersnot available
KeywordsInformed consentQualitative researchPsychologyLegislationFocus groupResearch ethicsMedical educationFace (sociological concept)Political scienceMedicineLawSociologyAlternative medicineSocial sciencePsychiatry

Abstract

fetched live from OpenAlex

BACKGROUND: In Canadian jurisdictions without specific legislation pertaining to research consent, the onus is placed on researchers to determine whether a child is capable of independently consenting to participate in a research study. Little, however, is known about how child health researchers are approaching consent and capacity assessment in practice. The aim of this study was to explore and describe researchers' current practices. METHODS: The study used a qualitative descriptive design consisting of 14 face-to-face interviews with child health researchers and research assistants in Southern Ontario. Transcribed interviews were analysed for common themes. RESULTS: Procedures for assessing capacity varied considerably from the use of age cutoffs to in-depth engagement with each child. Three key issues emerged from the accounts: (1) requirements that consent be provided by a single person thwarted researchers' abilities to support family decision-making; (2) little practical distinction was made between assessing if a child was capable, versus determining if study information had been adequately explained by the researcher; and (3) participants' perceived that review boards' requirements may conflict with what they considered ethical consent practices. CONCLUSION: The results suggest that researchers' consent and capacity knowledge and skills vary considerably. Perceived discrepancies between ethical practice and ethics boards' requirements suggest the need for dialogue, education and possibly ethics board reforms. Furthermore we propose, where appropriate, a 'family decision-making' model that allows parents and their children to consent together, thereby shifting the focus from separate assent and consent procedures to approaches that appropriately engage the child and family.

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)0.050
metaresearch head score (Gemma)0.074
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: Methods · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.950
Threshold uncertainty score0.265

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0500.074
Meta-epidemiology (narrow)0.0010.002
Meta-epidemiology (broad)0.0010.001
Bibliometrics0.0030.005
Science and technology studies0.0140.019
Scholarly communication0.0070.005
Open science0.0030.007
Research integrity0.0030.004
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 head0.964
GPT teacher head0.760
Teacher spread0.204 · 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 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

Citations31
Published2011
Admission routes2
Has abstractyes

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