We are Genomics England and our vision is to create a world where everyone benefits from genomic healthcare. Join us every fortnight, where we cover everything from the latest in cutting-edge research to real-life stories from those affected by rare conditions and cancer. With thoughtful conversations, we take you behind the science. You can also tune in to our Genomics 101 explainer series which breaks down complex terms in under 10 minutes.
Episodes
Wednesday Apr 28, 2021
Jillian Hastings Ward: The ladder of participation
Wednesday Apr 28, 2021
Wednesday Apr 28, 2021
"How do we climb the ladder, from the participant representation side? How do we demonstrate that we are partners who would be worth working with, from the view of those in power? And whose ladder is it anyway?"
In this week's episode of The G Word, Chris Wigley is joined by Jillian Hastings Ward, who is Chair of the Genomics England Participant Panel, a founding board member of the CureGRIN Foundation, and a participant representative on the National Genomics Board. Jillian's son, Sam, has the very rare genetic disorder GRIN1, which was diagnosed through the 100,000 Genomes Project.
Today, Chris and Jillian discuss the 8 rungs of the ‘Ladder of Citizen Participation’ - from the group of users being told to what will happen to them, to them having a role in decision-making.
Wednesday Apr 21, 2021
Professor Dame Sally Davies: Patient power and the future of healthcare
Wednesday Apr 21, 2021
Wednesday Apr 21, 2021
“In us and on us, we have our microbiome, which is more cells - bacterial, viral, and everything - than the number of human cells. And they're our friends. They’re like a garden, we've got to plant them properly. We need to be starting to look at those much more, and genomics is going to play a key role.”
In this week’s episode of The G word, Chris Wigley is joined by Sally Davies, Master of Trinity College, Cambridge, former Chief Medical Officer and UK Special Envoy on Antimicrobial Resistance. Having spent 20 years working with people with sickle cell disease, she is passionate about reforming healthcare, setting up the National Institute for Health Research and playing a key role in the establishment of Genomics England.
Today, Chris and Sally discuss generation genome, genetic exceptionalism and the value of patient stories.
Wednesday Apr 14, 2021
Dr Adam Rutherford: Genetic diversity and the language of race
Wednesday Apr 14, 2021
Wednesday Apr 14, 2021
“Today, where we are in the 21st century, genetics, anthropology and evolutionary biology are no ally to racists. In fact, they should be used as weapons against bigotry.”
In this week’s episode of The G Word, Chris Wigley is joined by Adam Rutherford, geneticist, author and broadcaster. Adam has produced several documentaries and books on genetics, is co-host of BBC Radio 4’s Inside Science and is an Honorary Senior Research Associate in the Division of Biosciences at University College London.
Today, Chris and Adam discuss how to empower individuals to tell their stories, genetic diversity and structures of bias, and a priceless movie prop.
Wednesday Apr 07, 2021
Shelley Simmonds: The first place you turn to is Dr Google
Wednesday Apr 07, 2021
Wednesday Apr 07, 2021
"At first, it's all a big whirlwind and you can't process the big bombshell that you've been given. Suddenly, it turns out the life you had mapped out is not going to be like that at all. Almost overnight, you become a geneticist, you become a physiotherapist, you become a nurse, you become a dietitian. You are now the expert."
Shelley is mum to Fraser, whose medical journey has been tough because he didn't have typical symptoms for any known conditions. But genetic testing found he had an alteration in one of his genes, leading to his diagnosis of Duchenne Muscular Dystrophy (DMD). As a family they later joined the 100,000 Genomes Project to find out why Fraser's non-textbook symptoms meant he didn't fall neatly into a faster DMD diagnosis.
In this episode, Chris and Shelley talk about the lived experience of families managing a rare disease, climbing Snowdon, and being active in supporting disability rights.