Empowering people to engage with genetics debate
Advances in genetics are radically altering how we understand health and disease, with implications across clinical practice and wider society. The Genomics Policy Unit (GPU), University of South Wales, was one of the first research units in the UK to focus on the preparedness of the public and healthcare professionals for the ‘new genetics’. Adopting innovative, interactive research methods, the GPU has empowered many people who might not typically engage with genetics to contribute to debates and policies about genetics, supporting young people to put forward their views to policy-makers in Wales and England, and the schoolchildren who produced their own genetics rap.
In its research to improve genetic literacy in the NHS nursing workforce, the GPU set a benchmark that has influenced competency development programmes in the US and Europe. The impact of this is further enhanced through development of innovative resources such as the Telling Stories website, where people affected by genetics can tell their story and help educate health professionals worldwide:
“I think that for me, it was a form of therapy. I needed to ‘shout out’ and it’s taken me 24 years! Thanks for giving me that release!” Participant of the Telling Stories project