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

Abstract

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.

  • Research Ethics
  • Children
  • Ethics Committees/Consultation
  • Policy Guidelines/Inst. Review Boards/Review Cttes.

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