How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study
Bibliographic record
Abstract
Background: Recently, it has been argued that the distinction between medical research and medical care is not as clear-cut as is often implied in research ethics protocols. Young people with cystic fibrosis, a progressive genetic disorder requiring daily management, often grow up participating in biomedical research. Given debates about the importance of the treatment/research distinction, as well as recent challenges to maintaining this distinction, the purpose of this article is to provide empirical evidence about young people's understanding of their research experiences. Methods: Semistructured interviews were conducted with 19 young people (ages 8 to 18 years) with cystic fibrosis. Interviews focused on their experiences participating in research related to cystic fibrosis, their reasons for participating, and their understanding of the distinction between research and treatment. Qualitative methods were used to analyze patients’ perceived distinction between research and treatment. Results: Some participants clearly distinguished between research and clinical care, using signifiers including the type and nature of procedure, purpose, and voluntariness of the activity. Other participants described research and treatment as connected activities. In some cases they labeled research-related activities as treatment activities, and in other cases their descriptions highlighted the overlapping nature of research and treatment in sophisticated ways. Conclusions: The results of this study support suggestions that the distinction between research and care as upheld by research ethics is not meaningfully sustainable in all contexts. Sometimes participants see research and treatment as separate activities, but in other instances they understand that research and treatment may be closely connected. The results of this study may aid researchers and research ethics boards in helping potential participants to understand the possible impacts of research participation.
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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 | 0.039 | 0.040 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.011 | 0.016 |
| Scholarly communication | 0.008 | 0.009 |
| Open science | 0.002 | 0.008 |
| Research integrity | 0.004 | 0.006 |
| Insufficient payload (model declined to judge) | 0.003 | 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".