Phasing Out Voluntary Donation in Clinical Trials: The Ethics of Mandating Biospecimen Collection
Bibliographic record
Abstract
Biomarker studies are one of the primary research vehicles for gathering necessary genotypic evidence in the search for genetic etiologies of disease. Until recently, samples used for biomarker studies were almost exclusively collected from participants donating to bio-banks or dedicated genome-wide association studies. Based on observations while serving on a research ethics board in Canada, it has become commonplace for clinical trial sponsors to mandate that participants provide tissue and other DNA samples as a condition for their participation in the trial. This viewpoint argues that imposing such a condition runs counter to the premise of voluntariness upon which bio-bank donation specifically, and biomedical research generally has historically rested. Public apprehension regarding data protection and fear of genetic discrimination can accentuate the ethical dubiousness of mandating bio-specimen collection.
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 imitationNot 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.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.531 | 0.461 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.002 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.008 | 0.056 |
| Scholarly communication | 0.015 | 0.010 |
| Open science | 0.004 | 0.009 |
| Research integrity | 0.021 | 0.026 |
| Insufficient payload (model declined to judge) | 0.001 | 0.001 |
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.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".