Children and Clinical Research

Researchers are often concerned about carrying out research with children and young people, because of the particular ethical challenges associated with such research. Yet, if children and young people are not given the opportunity of taking part in research, it is very difficult to obtain the evidence needed to improve the health services provided for them.

The Nuffield Council on Bioethics has explored these issues through an expert Working Party, supported by a stakeholder group involving young people and parents. Throughout the project, input was sought widely from young people, parents and professionals concerned with clinical research, in the UK and beyond. Views and experiences were sought through web-based surveys, an open ‘call for evidence’ and face-to-face meetings; through school projects in the UK and Kenya; through community engagement in Kenya; and through networks of research professionals working in low and middle income countries from South East Asia to Latin America. The final report, Children and clinical research: ethical issues, was published in May 2015. In line with the Working Party’s commitment to including children and young people in all aspects of its work, the main findings of the report are accessible to a wide age-range through a magazine and an animated film. All the Council’s materials are available free of charge from its website.

This course draws on the 2015 Nuffield Council report, and on the Council’s earlier (2002) report The ethics of research related to healthcare in developing countries. It refers also to major international guidance such as the Declaration of Helsinki, and the 2002 guidance published by The Council for International Organizations of Medical Sciences (CIOMS) in association with the World Health Organization. 

The quotations at the start of many of the sections of this course are all from the children, parents and professionals who contributed to the Nuffield Council’s project.