16th Nov 2016
Society and Ethics Research: what do we really think about genomics?
We listen and learn, as well as share and inform because dialogue, measurement and evaluation are integral to what we do.
The Society and Ethics Research group joined Connecting Science in 2016, and is led by Dr Anna Middleton. Anna is an experienced genetic counsellor, who now combines her clinical background with social science research techniques to explore people’s attitudes to various issues surrounding genomics. The work undertaken by the Society and Ethics Research group has fed directly into policy, education and practice, to make a real impact on the experiences of patients, health professionals, researchers and the wider public.
Society and Ethics Research uses a range of methods from online surveys, focus groups, to workshops and is continually asking ‘how are people responding to genomics?’ The group use innovative ways of bringing people to their research, such as by creating short, entertaining films that sit in surveys to explain what research is about and why participation is important. These films have been selected for screening at various international film festivals. The group has also drawn on the creative expertise of the advertising industry to turn genomics from an ‘antisocial’ to a ‘social’ concept for Genomics England and has developed a series of animations to find out how people can start everyday conversations about DNA and genomics.
Thousands of people in the UK have already participated in the group’s work, and there are exciting plans to increase their global reach through the translation of surveys into many other languages. As genomic technologies become more and more mainstream, Anna has ambitious plans for the expansion of her group (drawing on expertise from legal, bioethics, epidemiology and policy arenas) to actively engage with different audiences, listen to their views and improve how we all discuss and debate what can be a complex and challenging topic.
Anna is also active in the field of professional learning and education, working in multiple settings with Health Education England and others to ensure that health professionals have access to the latest thinking around key topics such as the ethics of sharing incidental findings, and consent.