A new report calls for a change in culture across all areas of children's health research, so that children's and young people's views and opinions can help to shape how research is prioritised, designed and reviewed.
Unless ethical concerns about asking children to take part in research are addressed, our understanding of childhood disorders and ability to provide evidence based care will remain limited, according to the report by the Nuffield Council on Bioethics.
"It will always be easier to say 'no' to research with children on the grounds that it's too difficult, but we should challenge the idea that it is acceptable to continue to offer healthcare to children without seeking to improve the evidence base for many of the treatments provided," says Professor Bobbie Farsides, Chair of the Nuffield Council on Bioethics Working Party and Professor of Bioethics at Brighton and Sussex Medical School.
The report, which has featured prominently on the front cover and editorial of The Lancet, is the result of a two-year inquiry, which has heard from over 500 professionals, parents, children and young people, in the UK and internationally.
In many areas of child health, evidence on childhood diseases and treatments remains limited because of a lack of research specifically with children. For instance, many medicines prescribed to children have not been developed specifically for children, meaning that doctors must use their expertise to adapt adult doses.
Research in areas such as childhood leukaemia, where survival rates are now over 80%, demonstrate the crucial role of research in improving healthcare. The Council argues that research with children should become a core part of the NHS.
"Being invited to take part in research can come at very difficult times in children's and parents' lives", said Professor Farsides, "but children told us time and time again that it was important they should be asked to take part in research, particularly as it may help other children in future."
The starting point for most health research is adult needs, leaving children's research lagging behind. While research ethics committees (RECs) assess the value, risks and benefits of all research proposals, members can feel anxious about approving research with children. The Council concludes that RECs should have access to experts in child health who can advise on the risks or burdens of normal practice, and areas where there is a lack of evidence. RECs should also require researchers to have listened to children and parents when developing their studies.
"Research should always be subject to robust scientific and ethical review, but by speaking to children and their families, researchers can design studies which are more suited to their needs, and ultimately more acceptable," says Hugh Whittall, Director of the Nuffield Council on Bioethics.
Although parents of children under the age of 16 legally consent on their behalf for them to take part in research, the Council concludes that, where possible, decisions should be a partnership between researchers, children and their parents.
Local contributors to the report included Professor Somnath Mukhopadhyay [ADD LINK], Chair in Paediatrics at BSMS; Janet Boddy, Professor of Child, Youth and Family Studies at the University of Sussex; and Isla Kate Morris, Research Governance Officer at the university. Children and young people took part from Downs Junior School, Brighton Aldridge Community Academy and Varndean Sixth Form College.
The report, along with a magazine version for young people and an animation can be found at www.nuffieldbioethics.org/children.