The Council has agreed to establish a new work theme to examine the ethical issues raised by the involvement of children and young people in clinical research. The central focus of this project will be to consider whether the current systems for regulating clinical research strike the right balance between promoting the understanding of childhood diseases (and the associated availability of evidence-based treatments for children) and ensuring the proper protection of child participants.
The project will be chaired by Professor Bobbie Farsides, Professor of Clinical and Biomedical Ethics at the University of Sussex, and is likely to begin in late spring 2013. Questions to be addressed could include:
- How may we ensure that appropriate priority is given to research that is most likely to benefit children? Are the current regulatory ‘sticks and carrots’, which aim encourage paediatric clinical research, working to best effect?
- How should the ethical acceptability of research projects be determined? How can we ensure that systems designed to protect children’s welfare do not simply become bureaucratic ‘hoops’? What role should parents play?
- How useful is it to focus on of a child’s ‘best interests’ or capacity to ‘benefit’ in the context of consent to research procedures, as opposed to treatment? Are there other ways in which a child’s welfare might be protected?
- What role should children themselves play in research decisions?
For more information please see the note of the exploratory workshop held in December 2011.
We would like to hear from you if you have an interest in this area, whether personal, public or professional, and would like to be kept informed about or contribute to this work.
A small Working Party of people with a relevant spread of knowledge and expertise will be established to take forward our enquiry and deliberations. At this stage, we wish to identify people who are interested in contributing to this work in any of a variety of ways: for example by providing evidence, participating in the working party, preparing expert reports, discussing specific issues with us, offering views, opinions and insights from personal experience, acting as an ‘external reviewer’ at a later stage once a draft report has been produced, fostering public debate, or putting our conclusions into practice. Hearing from people with an interest in the subject at this formative stage will help us to ensure we create the best opportunities for wider input to the work and that we do not miss out potential contributors. It will also help us to frame our work so that it can best engage with and meet the needs of relevant audiences.
If you are interested in helping us with this work or would simply like to be kept informed of progress please let us know by contacting us in any of the following ways:
- Email Kate Harvey on firstname.lastname@example.org
- Phone: +44 (0)20 7681 9619
- Post: Nuffield Council on Bioethics, 28 Bedford Square, London, WC1B 3JS
It would be helpful if you could let us know the nature of your interest, in what way you might be able to contribute, and/or whether you simply wish to be kept informed of progress. (Please note that participation is unremunerated.) See our data protection statement.
As this theme of work develops, further information will also be available via: