Are positive experiences of children in non-therapeutic research justifiable research benefits?

BACKGROUND: Conducting non-therapeutic research is ethically challenging because participation conveys risks and burden and no health benefit. In this paper, we report the positive experiences of a diverse group of healthy and ill children (6-18 years) who participated in non-therapeutic research studies and discuss whether these positive experiences can justifiably be viewed as benefits.

METHODS: We used semistructured interviews from an earlier study about children's experiences in clinical research and did a secondary analysis on the positive experiences of the children in the non-therapeutic studies (N=30). Interviews were analysed using 'thematic' analysis.

RESULTS: The interviewed children most frequently mentioned as positive experiences of non-therapeutic research participation helping others and the gratification that comes with it, possible health benefits in the future, having fun and new/increased knowledge about the human body, hospitals and doing research. Less frequently mentioned were getting a present, not having to go to school and getting extra attention from healthcare staff.

CONCLUSIONS: Our study shows that children participating in non-therapeutic research have various positive experiences while taking part. We argue that some of these justifiably could be taken into the risk-benefit analysis in certain situations or maybe even as a standard part of this analysis. This may help to increase the number of (crucial) non-therapeutic studies with children.