Young people’s voices go global: ethics, collaboration and engagement in international health research

Professor Bobbie Farsides

Council Member and Chair of the Working Party on Children and Research

Around this time last year we held the first stakeholder meeting of the Working Party on Children and Clinical Research. An amazing group of young people joined us to share their knowledge and experience of participating in clinical research, and they gave us a pretty firm steer on how to take things forward. The meeting had been prompted in part by a comment made by the Chair of the Royal College of Paediatrics and Child Health, who in a different forum had made it clear that any document offering guidance on the treatment of children and young people in a medical setting needed to have been written with their involvement and participation. ‘Nothing about me without me’ had to become part of our way of thinking.

Happily this idea excited members of the working party and that first meeting was only the first of many fascinating and productive projects we have engaged in to ensure that children, young people and their parents help to shape and have a clear voice in our final report. Some of these projects, such as the film project, young people’s survey and the stakeholder workshop have already been discussed in previous posts on this blog.

Most recently, Katharine Wright and I were delighted to be invited by Professor Mike Parker of the ETHOX Centre at the University of Oxford to join the fifth annual summer school of the Global Health Bioethics Network in Malawi to speak about the project and learn from their collaboration. This is an annual gathering of those involved in ethics and community engagement work at the Wellcome Trust’s Major Overseas Programmes in Thailand, Vietnam, South Africa, Kenya and Malawi. We already have excellent links with our Kenyan colleagues thanks to Sassy Molyneux and Vicki Marsh being job-share partners on the working party. With the help of their KEMRI based colleague Irene Jao they have enabled us to engage with children and young people in Kenya by conducting community based discussions and rolling out a version of our open consultation document. Another friend to our project was also at the meeting, Susi Bull, a former Nuffield Council Assistant Director and my old PhD student. Susi has helped us by linking us in to overseas researchers through her work on the Global Health Reviewers network. As well as old friends it was really exciting to meet new colleagues, many of whom conduct research involving children in very challenging settings.

On the second morning of the meeting Katharine gave an excellent account of our work so far and most importantly presented the philosophy we were developing in relation to understanding childhood and meeting the challenges of respecting a young person’s role as a decision maker. Predictably the child centred approach we presented was challenging for some delegates who quite rightly stressed the fact that children are viewed differently in different cultural settings. But then we played our trump card and showed the second of the two films about young people’s perspectives on how research gets approved by ethics committees. It’s fair to say that the children and young people of Brighton were excellent ambassadors for people of their age worldwide and by the end of the session many delegates were ready to challenge easy assumptions about children’s ability to understand and respond to complex scientific and ethical issues.

The Chair of the session was forced to bring discussion to an end with many hands still in the air, and Katharine and I enjoyed several one to one and group discussions as the week went on. People always wanted to return to what the young people had said and the depth and sophistication of their understanding. Whilst it would be naïve and inappropriate to assume that this one intervention could challenge people to change their view of children within their own cultural context, I’m pretty sure that all those present felt that the film demonstrated what children can achieve in terms of understanding and decision making if they are appropriately informed and sympathetically involved.

I should say that ours was only one of many presentations at the summer school and I think it is fair to say that the British contingent were left feeling that we have a lot to learn from our colleagues working on the overseas projects when it comes to community and public engagement. Having said that, Katharine and I were delighted with the response to our contribution and felt very pleased that on this occasion the voice of children and young people had been heard and listened to across international boundaries.