Bioethics Blogs

From the big tome to the small screen: animating our children and clinical research report

“Know your audience.” So say media trainers, journalists, and PR representatives the world over. Think it’s a good idea to address your audience in a way that will either bore them or exclude them? You might as well have a chat with the nearest wall (my friends often experience this when they try to talk to me about cricket).

Communicating appropriately with different audiences is something that a Nuffield Council Working Party has kept firmly in mind for the past two years, in its examination of the ethical issues of involving children and young people in clinical research. This report involved considering the perspectives of very young children, adolescents, their parents, and researchers, so communicating our work needed to be more bespoke than the usual way in which the fruits of a Nuffield Council Working Party are presented (usually a long report for those who want to explore the nitty gritty of the Working Party’s thinking, a short version for those with a little less time to read, and a one page version for members of Parliament with only five minutes to brief themselves).

For this project, however, a different approach was needed: after spending two years considering the role of children in clinical research, we had to practise what we preached. In the full report (all 200-plus pages of it), we write, “the proper involvement of children and young people in the research process, which involves at least some degree of transfer of power between adults and children… involves courage.” So, in February 2015, we courageously transferred our power to a group of young people who make up the membership of the Liverpool Young Persons’ Advisory Group (YPAG).

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.