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A new report by the Nuffield Council on Bioethics, published in May 2015,  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. While the practical recommendations in the report focus on the UK, the report makes a number of conceptual recommendations relevant to all those concerned with research with children and young people, in the UK and beyond (see chapter 7).
 
“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 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. including a community consultation activity in Kenya, and call for evidence distributed through the Global Health Network.
 
“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 role of research ethics committees (RECs) is to assess the value, risks and benefits of all research proposals. However, members of RECs told the Working Party that they can feel anxious about approving research with children. The Council concludes that to make properly informed decisions, 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. The Council recommends that registers of experts in different areas of child health should be set up and that employers should ensure that doctors’ time to serve on ethics committees is protected. Additionally, RECs should 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. “Throughout our project, we’ve heard from children with strong opinions on complex ethical and scientific issues. We shouldn’t underestimate them. Alongside appropriate regulation, we need a change in culture to ensure that children have a say in the whole research process.”
 
As well as the full report, the Council has produced an illustrated magazine version aimed at young people and parents, a one page summary which includes a list of points to consider when carrying out research with children and young people and an animation which conveys some of the key themes of the report from the perspective of Mia - a character who goes through some of the questions and issues that might be raised when a young person is invited to take part in clinical research.
 
Global Health Bioethics, Research Ethics and Review is delighted to be working with the Nuffield Council on Bioethics to develop a free, certified online training course focusing  on the ethics of research with children, to be launched shortly. Come and visit our Training Centre to see the range of research ethics courses: https://globalhealthtrainingcentre.tghn.org/