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Research with children and young people: not on them
  1. H M Sammons1,
  2. K Wright2,
  3. B Young3,
  4. B Farsides4
  1. 1 Division of Medical Sciences & Graduate Entry Medicine, School of Medicine, University of Nottingham, Derbyshire Children's Hospital, Derby, UK
  2. 2 Nuffield Council on Bioethics, London, UK
  3. 3 Department of Psychological Sciences, Institute of Psychology, Health and Society, University of Liverpool, Liverpool, UK
  4. 4 Department of Clinical and Biomedical Ethics, Brighton and Sussex Medical School, University of Sussex, Brighton, UK
  1. Correspondence to Dr H M Sammons, Division of Medical Sciences & Graduate Entry Medicine, School of Medicine, University of Nottingham, Derbyshire Children's Hospital, Derby, DE22 3DT, UK; helen.sammons{at}nottingham.ac.uk

https://doi.org/10.1136/archdischild-2015-309292

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    “It is not ethical to conduct research on children.” This comment is typical of objections in the past to studies with children. The continuing legacy of this viewpoint is that today's evidence base for the care provided to children is not as strong as it could be. Thankfully, however, this is now changing. We have learnt that, rather than protecting children and young people from research, we need to protect them through research and there is now a strong recognition of the need for ethically and scientifically robust ways to conduct relevant clinical research with children.1 The recent Nuffield Council on Bioethics report Children and clinical research: ethical issues is helping the continued evolution of this thinking.2 This article summarises some of its main findings and recommendations.

    The report examined the question: how can we ethically undertake the research needed to ensure their healthcare services are safe and effective, given that research often involves burdens and risks? Moreover, what role should children, young people and parents themselves play in influencing how research studies are carried out, and how can their voices help influence the wider research agenda? There were 19 key recommendations (summary; http://nuffieldbioethics.org/wp-content/uploads/Children-and-clinical-research-key-recommendations.pdf). The Nuffield Council on Bioethics explored these issues through an expert Working Party, supported by a stakeholder group involving young people and parents. Throughout the project, input was sought widely from young people, parents and professionals concerned with clinical research, in the UK and beyond. Views and experiences were sought through web-based surveys, an open ‘call for evidence’ and face-to-face meetings; through school projects in the UK and Kenya; and through networks of research professionals. While the focus of the report and its concrete recommendations are targeted primarily on the UK, they sought to ensure that the ethical analysis and conceptual recommendations had as …

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    Footnotes

    • Contributors KW, assistant director of the Nuffield Council on Bioethics, was responsible for establishing, steering and supporting the working party that produced the 2015 report ‘Children and clinical research: ethical issues’. HS and BY were members of the working party that was chaired by Bobbie Farsides. All authors contributed to the writing of this manuscript and approved the final version.

    • Competing interests None declared.

    • Provenance and peer review Commissioned; externally peer reviewed.