Over recent months the Council’s Working Party on children and clinical research has held a series of factfinding meetings as part of the evidence gathering process for this project.The aim of the meetings has been to gather views and evidence through speaking to a wide range of people including medical professionals and researchers, academics, and those involved with the governance of healthcare and research.Key issues which the Working Party has sought views on include:
- How do families make decisions about research participation?
- How is the agenda for paediatric research set and by whom?
- What are the particular ethical challenges faced by researchers & clinicians working with children, and how do they respond to these challenges?
- What is the role of ethical reviews and Research Ethics Committees in research involving children?
The Working Party plans to hold a further factfinding session exploring the concept of ‘vulnerability’ and how, whether and in what way children are vulnerable in clinical research contexts.Later this spring, the Working Party will also meet with a stakeholder group to review the direction of its work. This group was established following a stakeholder meeting which was held in July 2013, and includes young people and parents with a strong interest in, or personal experience of, participation in clinical research.ConsultationsA call for evidence for this project ran until October 2013, and responses were received from over 200 people, including over 150 from children and parents who responded via an online survey. Another consultation is now being undertaken among children, local communities, healthcare professionals and researchers in Kenya to hear views about this issue in a developing country context.The Council expects to publish a report in spring 2015.LinksFind out more about this projectSign up here for alerts about the projectRead the related blog post: What do you mean – ask children?! by project leader Katharine Wright.