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

• Published in: Journal of medical ethics 2017-08, Vol.43 (8), p.530-534
• Main Authors: Staphorst, Mira S, Hunfeld, Joke A M, van de Vathorst, Suzanne
• Format: Article
• Language: English
• Subjects: Adolescent; Altruism; Analysis; Attitude; Beliefs, opinions and attitudes; Bioethics; Child; Child Behavior; Children; Children & youth; Clinical trials; Ethics; Ethics, Research; Experience; Female; Health; Health aspects; Health care; Health Status; Humans; Informed consent; Interviews; Learning; Male; Medical ethics; Medical research; Medicine, Experimental; Methods; Parents & parenting; Participation; Pediatrics; Pleasure; Psychiatry; Psychology; Qualitative research; Research Design; Research ethics; Research Subjects; Surveys and Questionnaires; Teenagers
• ISSN: 0306-6800; 1473-4257
• DOI: 10.1136/medethics-2016-103404

BackgroundConducting 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.MethodsWe 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.ResultsThe 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.ConclusionsOur 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.