Informed Choice for Newborn Blood Spot Screening in the United Kingdom: A Survey of Parental Perceptions
Bibliographic record
Abstract
OBJECTIVE: In the United Kingdom, newborn blood spot screening proceeds on the basis of consent based on an informed choice. However, little is known about parent experiences of this process. This study was intended to explore parents' understanding of newborn screening and their experience of the consent process using a structured survey. METHODS: A mail survey exploring key components of consent was sent to parents whose children had been screened in the year before the study. A descriptive analysis of responses together with logistic regression was performed to identify variables that predicted parental likelihood to agree that they had made an informed choice to screening. RESULTS: Most parents indicated they understood why the heel prick was done, but only a third understood how conditions would be dealt with if found. Almost a third of parents reported that they did not feel they had a choice to decline screening, yet >70% felt they had made an informed choice. Logistic regression indicated previous children, understanding why the heel prick was done, having time to make a decision, and feeling they had a choice were significant predictors of feeling an informed choice had been made. CONCLUSIONS: The findings support previous studies that screening may be seen as a fait accompli. Analyses indicated that allowing time to make a decision (eg, by providing information during pregnancy, emphasizing the decision-making aspect, and clearly articulating the reasons behind screening) may help parents feel that they have made an informed choice.
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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 | 0.006 | 0.022 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
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.
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; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
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".