Bioethics Blogs

Involving children in clinical research: GenerationR grows up

The Children’s Commissioner’s Takeover Challenge kicked off on Friday – in this post, our Senior Research Officer Kate Harvey reflects on two years of progress in involving children in the design and delivery of medical research.

September 2013 witnessed a milestone moment in the involvement of children and young people in clinical research across the UK: for the first time, young people, parents, researchers, and practitioners gathered at a national event to discuss how children and young people can be meaningfully involved in clinical research.

This discussion took place under the banner ‘Generation Research’ – or, to give it its shorter title – GenerationR. This is a collective of young persons’ advisory groups (YPAGs) located across the UK in Liverpool, Birmingham, London, Bristol, Nottingham, Aberdeen, as well as a topic-focused mental health YPAG based in London. Each YPAG is comprised of around 10-15 members who are aged eight to 19 years old. The groups meet every six weeks either at weekends, in the evenings, or during school holidays. They help researchers – from both commercial and non-commercial sectors – to adapt the design and delivery of research which seeks to involve children and young people, for example by asking for young people’s comments on a proposed study protocol, or asking for their advice about how patient information leaflets should be drafted.

The 2013 event (summarised here) was conceived and organised by young people, and subsequently led to a meeting report.

Two years on…

Over two years have now passed and recently young people, professionals, and researchers gathered at Great Ormond Street Hospital to discuss progress since 2013, and what needs to happen next to make sure that young people’s ongoing input to the conception, design and delivery of clinical research continues to be realised.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.