The Council’s Working Party on children and clinical research presented its current work to young people and parents at a meeting on Wednesday 30 April.
Guests also included members of a stakeholder group formed at the outset of this work, which includes young people, parents and professionals with personal experience of taking part in or working with clinical research. The group has been involved throughout the project to ensure that the focus of the Working Party is informed by those directly affected by or with a strong interest in clinical research involving children and young people.
The aim of this meeting was to discuss themes that have emerged in the deliberations of the Working Party, and the findings of its evidence gathering so far. The group also reviewed two films produced as part of a short research project to find out what young people think about the ethics review process when clinical research involves children.
Discussion during the day covered issues such as
- How should we think about research with children and young people? Is it important?
- How helpful is ‘vulnerability’ as a concept when we talk about involving children and young people in clinical research?
- To what extent can or should children and young people make their own decisions about whether to participate in clinical research?
- How could researchers design their research better for children and young people?
- How should decisions be made about what research gets done?
Download a note of the stakeholder meeting.
A report of this project will be published in early 2015.