On 22 April 2016 the Nuffield Council on Bioethics hosted a meeting to explore collaboration between life-sciences industry and young people to improve research.
The meeting brought together young people with those involved in promoting involvement from the National Institute of Health Research (NIHR), those with expertise from industry (from both practical and policy angles) and those with expertise in ethics.
The Nuffield Council on Bioethics published a report Children and clinical research: ethical issues in 2015, in which it argued that genuine engagement with children, young people and parents, throughout the research endeavour, was ethically necessary. The report recommended that industry partners should contribute financially to the running costs of initiatives that facilitate involvement, such as the network of Young Persons’ Advisory Groups.
The meeting aimed to explore the benefits of young people’s involvement in the wider research agenda, the challenges to achieving such involvement, and crucially, ways in which we could start tackling those challenges. A number of suggestions for future action were put forward, including the development of a ‘statement of aspiration’, to which individuals or organisations could sign up, which could then inform the development of a position paper setting out guidance on good practice and showcasing what young people can contribute.
A full note of the meeting is now available to download.
If you are interested in the issues discussed at this meeting and/or would like to contribute to the development of guidance on involving children in clinical research, please contact Katharine Wright, Assistant Director: firstname.lastname@example.org.