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Research with children and young people: not on them. What can we learn from the non-clinical research?
  1. Helen M Roberts1,
  2. Kristin Liabo2
  1. 1Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
  2. 2PenCLAHRC Patient and Public Involvement Team, University of Exeter Medical School, Exeter, UK
  1. Correspondence to Professor Helen M Roberts, UCL Great Ormond Street Institute of Child Health, London WC1N 1EH, UK; h.roberts{at}ucl.ac.uk

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In their 2016 article, Sammons et al summarise the recommendations of the Nuffield Council on Bioethics report, Children and Clinical Research: the Ethical Issues.1 We welcome the article’s important message that researchers look beyond age when considering ethical and participatory issues and respond as critical friends (more friends rather than critical) to the six issues they identify. We provide additional material on the history and wider context, including child public health, education and social care research, bearing in mind that the service context for children has tended to be more multiprofessional than for adults. Social science and social care have a sustained history to offer on participation and how to research with and not on children and young people.

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1. Clinical research and its context. The Nuffield report considered clinical research to include ‘any encounter with children and young people that holds out the prospect of improving healthcare including preventative healthcare.’ The National Cancer Institute defines clinical research as an endeavour ‘in which people, or data or samples of tissue from people, are studied to understand health and disease,’ while the ever useful Wikipedia describes clinical research as ‘a branch of healthcare science that determines the safety and effectiveness of medications, devices, diagnostic products and treatment regimens.’

The wider context: Are research encounters with children and young people clinical when they include education, social care and research with mothers, who after all provide the lionesses’ share of healthcare in its widest sense? Probably not, though we acknowledge that extending the medicalisation of everyday life has positive as well as problematic effects. On the plus side, clinical studies bring the benefit of an authority rare in other disciplines. Less positively, the lack of attention to the much longer tradition of exploring the ethics of inclusive research …

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