Behind the Genes

Professor Pali Hungin: The human element

“The human element is going to become increasingly important. In the presence of high-level technologies, machine learned algorithms and highly personalised precision medicine - perhaps based on genomics - in the presence, even, of all those items, it will be the contact between care delivery and the care receiver that will remain important.” 

In this week’s episode of The G Word, Chris Wigley is joined by Professor Pali Hungin, former GP and president of the British Medical Association, emeritus professor at Newcastle University and researcher in gastroenterology and associated clinical and psychological factors. Having received an OBE for services to research in 2000, Pali has spent much of his career attempting to bring about positive change, establishing and leading the Changing Face of Medicine project at the Academy of Medical and Royal Colleges and sitting on the Access Review Committee at Genomics England.  

Today, Pali discusses the need for radical change in medicine, suggests clinicians should be armed with genomics and AI, and champions technological advancements in healthcare. He also discusses his work with the Changing Face of Medicine project and offers some advice for young people hoping to get in to medicine.  

Dr Andrew Roddam: Changing health research for the better

“Today we still have a significant number of people who are suffering ill health in later life, and often suffering it because we're diagnosing conditions led to them. We’re getting to people and treating them when they end up with things like stage three or four cancer or dementias; we only pick them up at the point when they start to be clinically visible. And it's really difficult to start to treat those individuals at that point.” 

In this week’s episode of The G Word, Chris Wigley is joined by Andy Roddam, renowned epidemiologist and Chief Executive Officer at Our Future Health. Having earned his doctorate degree in Statistics from The University of Oxford and completed a post-doctorate in Infectious Disease Epidemiology, Andy has held several roles across both academia and industry, principally focusing on the application of epidemiological methods to advance the understanding of human disease.  

Today, Chris and Andy discuss health data and how best to collect it, interventional research, personalised treatment and the importance of predictive prevention.  

Dr Melanie Lee: Putting the patient at the heart of the mission

“If we wrap our missions around the patient and have early connections with them, I believe the data packages we pass on to those developing a product will be much richer, and diagnostic development may be much shorter - 2-3 years rather than 25 years.”

This week on The G Word, Chris Wigley is joined by Dr Melanie Lee, CEO of medical research charity LifeArc. LifeArc translates promising scientific innovations into well-informed products for the benefit of patients. LifeArc are currently supporting a number of COVID-19 studies, including the GenOMICC Study, in partnership with Genomics England.

Today, Chris and Melanie talk about engaging with different communities to identify the right problems, and discuss why receiving a diagnosis, even if there isn't necessarily a direct link to treatment, can be so important.

Jillian Hastings Ward: The ladder of participation

"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.

Professor Dame Sally Davies: Patient power and the future of healthcare

“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. 

Dr Adam Rutherford: Genetic diversity and the language of race

“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.   

Shelley Simmonds: The first place you turn to is Dr Google

"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.

Lord Bethell: The importance of embracing disruption

"We have accept that things are going to come along in our field that are going to make us feel uncomfortable, and they're going to stretch us. And we shouldn't be frightened of that."

Using his experience from his days working at the Ministry of Sound, Lord Bethell is keen to mobilise impact in the genetics and genomics world as quickly, and as equitably, as possible.

In this episode, Chris and Lord Bethell talk about the vision of a perfect understanding of the human body and using that to drive genomic medicine, the challenges along the way, and what we can learn from the rapid scaling at incredible pace throughout the COVID-19 pandemic.

John James: We need commitment and we need leadership

"Here we have a condition that has been known medically for hundreds of years, people have received Nobel Prizes for their analysis and understanding of its genetic makeup. Given what is known about sickle cell, genomic research into treatments and cures should be amongst the low hanging fruit within the scientific development."

John James, CEO of the Sickle Cell Society and the first Black African-Caribbean Chief Executive in the NHS, believes that it is fundamental to acknowledge that inequalities exist before transformational change can happen across our health services as well as in research. Only then will we start closing the gaps in the differences in healthcare outcomes and treatments for all of the people our NHS serves.

This week, Chris and John tackle the challenges of reaching weary ethnic minority communities, the importance of role models, and the difficulties in translating exciting scientific advancements to healthcare professionals who are already under incredible pressure.

Dr Natalie Banner: How to talk about data without talking about data

"Data is quite a technical topic. It's quite dry. One workshop participant said, 'Oh, you say the word data and I fall asleep.' Engagement needs to be about what matters to people, the benefits to people." 

Dr Natalie Banner is an expert on the power of data, and uses her knowledge and experience to guide decision-makers and ultimately make health data a more accessible subject for all. After all, data saves lives.

In this episode, Chris and Natalie talk about the early, big challenges around genomic data like data privacy and meaningful consent; where the responsibility should lie in engaging people in the genomic conversation; and where we could be five years from now.