Adult research ethics committees are often asked to make decisions about research projects that involve children and young people, but not enough is known about young people’s views of research ethics. The Centre for Innovation and Research in Childhood and Youth (CIRCY) has been working with the Brighton and Sussex Medical School, the University of Nottingham and the Institute of Education, London, on a project with the Nuffield Council on Bioethics. Our aim was to learn from young people about research ethics when children are involved in clinical research. We worked with young people in three schools/colleges, and with a film maker, Vivianne Howard from Helter Skelter Media. In this blog Natasha Wilcock, Rosie Bradford and Elis Richardson, three young people from a sixth form college in Brighton, write about their experience of taking part in the project.
What it was like to take part in the consultation, why we were there and what the researchers can learn from us.
Recently seven students from Varndean College, Brighton (along with others from local primary and secondary schools) took part in a consultation regarding the involvement of children in clinical research. This was for the Nuffield Council on Bioethics in collaboration with their colleagues from the Universities of London, Nottingham and Sussex. During the workshop we discussed our opinions on a proposed treatment for children with severe asthma and about how to conduct research involving children and young people.
The aim of this project was clear: to find out “What we think about what adults think”. It made sense therefore when the researchers came to hear our opinions! But in so many areas our opinions are just inferred from adults. So as clear differences arose between our views and those of the adult research ethics committee, it is obvious that young people’s views should be sourced directly and entirely respected. Involvement in a clinical trial can truly change a child’s life, it may affect the family, but it is the child who will live will the consequences, therefore their opinion should be highly valued.
After watching the final film of the workshops we were surprised to see general agreement across the board. Especially regarding possible incentives I found it remarkable that across all the ages there was a clear consensus- participation in the trial should come only from the “goodness of your own heart” not for the suggested measly £20 Amazon voucher (personally I wouldn’t be persuaded to do anything for a few second hand books). But the fact that the researchers included this suggests they thought we could be persuaded by money. The film showed that young people’s motives are more altruistic than adult’s. Maybe we are guided by purer morals, so shouldn’t we be listened to more?
The overwhelming recommendation from the video was for all clinical trials involving children to really involve them in a personal way. Researchers must realise that with children and young people there is no “one size fits all” solution. Children, young people and their families are so diverse that there is no way all of their experiences could be appropriate without tailoring aspects of the trial to their personal needs. For example, having a personal conversation with a doctor with the possibility to ask questions instead of just reading a blanket information sheet would ensure assent and consent are truly informed. You must give information to young people and their parents in different ways, everyone knows teenagers and their parents don’t always see eye to eye (putting it mildly) so how could you treat them both in the same way?
The task of ensuring that children’s involvement in clinical research is an interesting yet complex one. But if adult researchers can understand their limitations, knowing that children and young people have strong opinions that we deserve to have heard, and then together we can use our relative expertise and insight for the benefit of children and maybe even adults too.
-Natasha Wilcock, Rosie Bradford, Elis Richardson
More information about the project, including the two films from the workshops, is available from the Nuffield website. Alternatively you can download the final report “What we think about what adults think”: Young people’s perspectives on ethics review of clinical research with children.