Dr Rachel Iredale of the Genomics Policy Unit was awarded £24,000 from the Wellcome Trust to conduct a Citizen’s Jury with young people aged 16-19 years across Wales on the topic of ‘Genetics and Reproductive Decision Making’. This project was run in conjunction with Dr Marcus Longley at WIHSC and with collaborators from the Wales Gene Park and Techniquest and was held in Cardiff in September 2004.
Modelled on the juries used in legal trials, a Citizens’ Jury brings together a group of people, lets them listen to and question the experts, and then make up their own minds on an issue of major importance to us all. They get to grips with the evidence directly, and make a decision according to what they think is right. It is based on the premise that ordinary people given enough opportunity, time, support and resources are eminently capable of arriving at decisions about complex policy matters.
This is cutting edge work. Not only is the topic a difficult one – combining cutting-edge science and technology with complex ethical issues – but also the engagement of young people in this way breaks new ground. One of the reasons for the success of the project in attracting funding is that it required substantial methodological initiative to engage young people – themselves on the threshold of making reproductive decisions – in a way that genuinely allows them to connect with the issues.
The majority of the Jury was in favour of people being allowed to 'design babies’ to prevent genetic conditions from being passed on and said that it is acceptable to design babies for the purpose of curing existing children with serious medical conditions, so called 'saviour siblings’. However, the Jury opposed the idea of designing babies for no medical reason, such as sex selection, and came down strongly in favour of regulation.
The Jury’s recommendations were disseminated widely to key advisory and regulatory bodies, such as the Human Genetics Commission, the Human Fertilisation and Embryology Authority, the Wales Assembly Government, as well as to schools, science centres, young people’s organisations and others.
To watch videos of the witnesses, visit the Wales Gene Park website.