BSMS projects explore what young people think of medical research ethics
A researcher in the Brighton and Sussex Medical School (BSMS) has led a project to explore what young people think about medical research that involves children.
Bobbie Farsides, Professor of Clinical and Biomedical Ethics at BSMS and Chair of the Nuffield Council on Bioethics’ working party on children and clinical research, said the project’s aim is “to find out how young people see the ethical review process when clinical research is carried out involving children and young people”.
The project – a collaboration with researchers from the University of Sussex, the University of Nottingham and the Institute of Education – involved workshops at Downs Junior School in Brighton, Brighton Aldridge Community Academy (BACA) in Falmer and Varndean College, a sixth form college in Brighton.
At each workshop, students were shown a film that features a ‘mock’ adult research ethics committee (REC), chaired by Professor Farsides.
The REC debated the ethics associated with a fictional clinical research protocol that involved testing a new method of prescribing two different types of medication for severe childhood asthma.
The same research protocol was then presented to the students at each school, and their reactions to its contents were filmed both before and after they had been shown the deliberations of the adult REC.
The fictional clinical research protocol was produced working with Professor Somnath Mukhopadhyay and one of his patients, both of whom appear in the films making the case for research to be undertaken.
A number of themes emerged from the project and are presented in the films:
- Keeping it personal: Participants highlighted the importance of ensuring that children and young people are meaningfully engaged in the development, design and review of research. Researchers should pay attention to the circumstances and feelings of individual children, and build relationships of trust and respect.
- Being fully informed: It was considered important that researchers consider the most appropriate way to inform and communicate with children and young people – as well as their parents – before, during, and after research.
- Valuing contributions: The young people were generally more comfortable with expressions of gratitude after participation in research, than with a promise of reward as an incentive to participate.
The findings of this project are summarised in a report written by Dr Janet Boddy (University of Sussex), Dr Grace Spencer (University of Nottingham) and Dr Rebecca Rees (Institute of Education, University of London), with support from Nuffield Council staff.
The two films, directed by Vivianne Howard of Helter Skelter Media, were screened at a launch event at BSMS in March. The event was attended by young people from the schools that participated in the workshops, along with their parents and teachers.
BSMS is a partnership between the Universities of Sussex and Brighton together with NHS organisations throughout the south-east.