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Flourishing as a health data scientist: HDR UK’s Black Internship Programme
"It's so important to have companies that represent [black] people. Because if you see people like you, who look like you, you're gonna feel like they have your best intentions."
On Today's episode of The G Word, Sophia, the Design Researcher for our Diverse Data team, is joined by Professor Martin Levermore, hub member and pioneer of the programme, alongside two of the programme's interns, Samuel and Mbasan.
They discuss the need for black talents in genomics and how the Black Internship Programme is breaking barriers to enable the diversification process. They also discuss the importance of representation when asking for sensitive information from unrepresented communities, breaking the distrust to gain a broader insight into our genomic data.
|Aug 10, 2022|
Lucy McKay: Opening the door to rare diseases
"Every disease is a rare disease because it's a disease in you, and it's interacting with you. So, this idea that there are rare diseases, and there are common diseases, [is] kind of nonsense because everything is rare in the context of a given human being."
On today's episode of The G Word, our CEO, Chris Wigley, is joined by Dr Lucy McKay, CEO and founder of Medics for Rare Diseases. Medics for Rare Diseases is a grassroots charity created to change the attitude towards rare diseases and changing the ground for people with rare diseases.
Together, they discuss Lucy's genomics background, delving into her personal relationship to rare disease through her brother and how a conversation at the dinner table with her parents opened the door to many opportunities. They also cover the impact of using terminology such as 'disease' and 'rare' towards patients and in classrooms.
|Aug 03, 2022|
Professor Sir Mark Caulfield: The predecessor’s view
"In cancer, it's been more challenging, because we had to get a community that hadn't really worked on the scale of data at all, to come to terms with that."
On today's episode, Matt Brown, our Chief Scientific Officer at Genomics England is joined by professor Sir Mark Caulfield, one of the founding employees of Genomics England and predecessor to Matt Brown as Chief Scientific Officer.
Today, they'll be discussing Mark's recollections of his time as Chief Scientific Officer of Genomics England, and his thoughts about pharmacogenomics' future.
|Jul 27, 2022|
Data science: The need for health equity
"Biomedical datasets are biased towards Western white rich men typically. This means that historically underserved groups are less likely to be represented in the data."
Today on The G Word, Maxine Mackintosh, the Programme Lead for Diverse Data at Genomics England, is joined by Alisha Davies from Public Health Wales and the Alan Turing Institute, and Brieuc Lehmann, from UCL, and both of whom are involved in the data science for Health Equity community.
They discuss the role of data and data science in promoting and improving health equity. They also talk about the lack of representation and diversity in genome research and how and why this must change.
|Jul 20, 2022|
Zoe Conway: Sarcoma Awareness Month, part two
"Chris had been somewhere between a father and a brother to people in Downing Street. He wasn't just principal private secretary."
Today on The G Word, Vivienne Parry, our Head of Public Engagement at Genomics England is joined by BBC journalist Zoe Conway whose husband, Chris Martin, died of a rare form of sarcoma in 2015.
They discuss the story of Chris Martin and his sarcoma journey. They talk about how difficult it is to diagnose sarcoma and its subtypes. They also discuss how it affected him whilst being David Cameron's Principal Private Secretary.
|Jul 13, 2022|
Adrienne Flanagan: Sarcoma Awareness Month, part one
"To gain information and insight into these, particularly, rare tumors, we will have to collect them for many, many years."
Today on The G Word, Vivienne Parry, our Head of Public Engagement at Genomics England is joined by Professor Adrienne Flanagan. She is the professor of musculoskeletal pathology at UCL and is perhaps the most distinguished academic in this field in Europe. She has made major contributions to the biology of osteoclasts in conditions such as osteopetrosis and made a major advance with her discovery of the locus for the gene causing cherubism. Adrienne has also been very proactive in developing collaborative links to advance genetic studies in sarcomas.
Together, they discuss the symptoms of sarcoma, what sarcoma is and its different subtypes. They also discuss the changes in Sarcoma research through genome sequencing and its future in the field of medicine.
|Jul 06, 2022|
Professor Robert Weinberg: Why do we get cancer?
"Mutations are the price that all animals must pay, starting with jellyfish all the way up to us humans"
Today on The G Word, Parker Moss, our Chief Commercial Officer is joined by Professor Robert (Bob) Weinberg. Professor Weinberg is a founding member of the Whitehead Institute for Biomedical Research and is a well-respected Professor in the MIT Department of Biology. He is the author of the legendary paper, the Hallmarks of Cancer, which was one of the most cited papers on life sciences of all time, and still provides us with much of the language of modern cancer biology.
They discuss why cancer occurs, why it spreads, the challenges and the hopes for early detection, and how research is contributing to improving survival for patients around the world.
|Jun 30, 2022|
Prof Kate Tatton Brown: Knowledge is Changing The World of Healthcare As We Know It
"We need to think about Genomics and we need to think about education because both are going to massively, massively change, and improve. I think we will be living in a very different space [in 30 years] than we are now...we are at the tip of the Iceberg."
In this episode of The G Word, our CEO Chris Wigley is joined by Professor Kate Tatton Brown who is the Clinical Director and Head of the Genomics Education Programme at Health Education England. She's also a consultant in clinical genetics at St. George's University Hospital, and a Professor in clinical genetics and genomics education with St. George's, within the University of London.
Together, they discuss Kate's pursuit of education for others around the complex topics of genomic medicine and research. Delving into the fundamentals of undergraduate and postgraduate curriculum changes, NHS involvement in genomic healthcare and the necessity of moving forward within research. They also discuss the importance of genomic awareness, access to testing and their project GeNotes - genomic notes for clinicians.
|Jun 23, 2022|
Nadeem Sarwar: Drug discovery: why do Pharma want my data?
"...the insights we get from human genetics truly are a gift from nature..."
On today's episode of The G Word, Parker Moss, our Chief of Ecosystems and Partnership Officer, is joined by Nadeem Sarwar, the Global Head of Genomic Strategies and Global Head of Digital Therapeutics (DTx) Strategies at Eisai.
They discuss the difference between associations and drivers of disease, the importance of knockouts and the benefits of having insights through our DNA. They also discuss the phenomenon of making medicine, how quickly we can change/have changed the realm of medicine and the possibilities of the future.
|Jun 16, 2022|
Fireside Chat with Daphne Koller, insitro: Machine Learning and Multimodal Data in Drug Discovery
“We are now in a world where there is this an abundance of data, which is only the beginning to what we're likely to be able to see in the coming years. At the same time, we have this incredible set of machine learning methods [...]. This seems to be a moment in time when those two tidal waves are about to come together in a way that offers us the opportunity to unlock some of the underlying secrets and complexities that underlie human health and human disease.”
This week we are sharing for posterity the discussion that Parker Moss, our Chief Commercial Officer, hosted earlier this month at the Genomics England Research Summit. Parker’s discussion was with the world renowned Daphne Koller, the founder and CEO of insitro.
Parker and Daphne explored the use of AI and machine learning in drug discovery and discussed the value of multimodal analysis. They also touched on some of the challenges of causal inference and target validation with unsupervised machine learning methodologies. Parker and Daphne then discussed the recent partnership between Genomics England and insitro.
|Jun 08, 2022|
Dr Genya Dana: The Power of Genomics
“What will be important is to engage with the patient community, it will be a very important process to complement the science that we are doing and to engage with those ultimate end users. That is the beauty of having these conversations with the people who are going to eventually end up adopting the technology.”
Today's episode of The G Word is a little different. We are sharing a live recording of a recent discussion at the Public Policy Projects Global Genomics Conference between Chris Wigley, our CEO, and Dr Genya Dana, Global Head of Health Policy at Avellino.
In their conversation, they delved into all things policy, such as data, ethics and education as genomics comes into the mainstream of healthcare and society. They also discussed the importance of engaging with the participant community and Dr Genya Dana’s work in the Precision Medicine Department at the World Economic Forum.
|Jun 01, 2022|
Professor, Sir Munir Pirmohamed: Disease, Drugs and Genomes
"If we had the same immune system, all of us, then we would be extinct by now"
On todays episode of The G Word, our CEO, Chris Wigley, is joined with Professor, Sir Munir Pirmohamed, a British clinical pharmacologist and geneticist. Munir is also the NHS chair of Pharmacogenomics at the University of Liverpool.
They discuss the importance of pharmaceutical drug development, understanding genome structures to better identify and predict diseases and how our lifestyle choices can lead to variation in how our genes interact with drugs. They also delve into the complexity of pharmacogenomic decisions, discussing, taking into account both clinical and genomic factors.
|May 25, 2022|
Greg Elgar: How does clinical whole genome sequencing work in the real world?
"We're taking the native DNA molecule that's actually from the cell and we're reading the sequence of that molecule. That comes with some tremendous, enormous benefits, but it also comes with it some huge challenges."
On today's episode of The G Word, we are joined by Parker Moss, our Chief Commercial Officer at Genomics England, and Greg Elgar, the Director of Sequencing Economic England.
They discuss techniques such as preparation ahead of sequencing itself and the logistics to get blood and tissue from humans into the sequencing lab in Cambridge. They also delve into the science of how sequencing itself works, what is needed for accurate sequencing and highlight and debate the implications of genomics, as well as, how it comes into the mainstream of health care and society.
|May 18, 2022|
The Genomics England Research Summit: Pick of the Conference!
“I Remember when I got to the stage to introduce Edwin Cuppen, who was the first speaker on the cancer Genomics track, and I was just… it’s happening! It’s happening! We did it!”
On today's episode of The G Word, we are joined by the chairs for scientific content at the recent Genomics England Research Summit: Dalia Kasperaviciute, Head of Genomic Data Sciences for Rare Disease; Alona Sosinsky, Scientific Director for Cancer; Francisco Azuaje, Director of Bioinformatics, and Maxine Mackintosh, Programme Lead for Diverse Data, all at Genomics England.
They choose their picks of the Summit, some of their favourite moments, and how it felt to get together again with the genomics community under one roof. They also discuss how what they saw and heard highlights the power and implications of genomics, as it comes into the mainstream of health care and society.
|May 11, 2022|
Angela Saini: The history of race science, the use of language and its implications on genomics
"The vast majority of what we think of as human differences, cultural and linguistic, the act of categorization in science itself, I've come to see as fundamentally fraught and political."
On this week's episode we join Diksha Srivastava from our Diverse Data team, Ewan Birney from EMBL-EBI and special guest Angela Saini, a science journalist, broadcaster and the author of best selling books Geek Nation, Inferior, and Superior: The Return of Race Science, published in 2019. Angela's work has appeared in Science, Wired, The Guardian, The New Humanist and New Scientist. She is also a presenter on the BBC Radio.
They discuss about the history of race science, the use of language and its implications on genomics.
|May 04, 2022|
Nobel Laureate Harold Varmus: Cancer Biology and the future of Cancer Research
“It's critical that the general public understand that science is a long process, and that science is a process that often begins with the art of the feasible. […] We wouldn't be anywhere without computers, we wouldn't be anywhere without DNA sequencing methods. That not only gives me confidence, but it also makes me feel that there's an awful lot left to do.”
In this week’s episode of The G Word, our Chief Ecosystems and Partnership Officer Parker Moss is joined by Harold Varmus, who was previously the director of the National Institute of Health and of the National Cancer Institute and is currently the Lewis Thomas University Professor of Medicine at Weill Cornell Medicine and a senior associate at the New York Genome Center. He also won the 1989 Nobel Prize in Physiology or Medicine for discovery of the cellular origin of retroviral oncogenes with J. Michael Bishop.
Today they discuss cancer biology, the future of cancer research and the major questions that studying diverse ethnicities will uncover through genomics. Harold and Parker also discussed some of the big challenges of bringing molecular diagnostics and genomics into lower income countries and the technologies that are continuing to help explore functional genomics in cancer.
|Apr 27, 2022|
Dr Annalisa Jenkins: The role of Genomics in Therapeutics
“Patients are absolutely firmly at the centre. That every day we get out of bed, with the patient and their caregivers and families, front of mind. […] You can't be successful in drug development and novel therapeutic development, without engaging the patient communities, as a partner and as a collaborator on the journey.”
In this week’s episode of The G Word, our CEO Chris Wigley is joined by Dr Annalisa Jenkins, non-Executive Director at Perspectrum Ltd, Oncimmune, AVROBIO, Affimed, COMPASS Pathways and Genomics England
They discuss Annalisa’s background across life sciences and the role of genomics in development of diagnostics and therapeutics. They also discuss the importance of patient communities.
|Apr 22, 2022|
Tamsin Berry: The World of Life Sciences
"The big realisation for me working in life sciences is if we didn't have [this] industry, to translate this amazing science that comes out of academic institutions into usable products, then we wouldn't be able to benefit as individuals."
We join Chris Wigley and special guest Tamsin Berry in today's episode of, The G Word. Tamsin is Partner at Population Health Partners, and former Director of the UK government’s Office for Life Sciences.
They discuss the importance of Life Sciences and what it is, focusing on the impact this particular research has on individual lives. They discuss how Tamsin became a part of the life science world and her journey to becoming Director of the Office of Life Sciences. They also discuss the importance of research funding and genome understanding.
|Apr 13, 2022|
Sir Patrick Vallance: The evolution and future uses of genomics
“The whole area is going to be crucial for everything from monitoring waste, you can think about its use in monitoring biodiversity, such a key area for the future. You can think about the impact of the environment and on the changes in species across the world over time. This is going to be a ubiquitous area of societal discussion.”
In this week’s episode of The G Word, our CEO Chris Wigley is joined by Sir Patrick Vallance, the Government’s Chief Scientific Adviser and the Head of Government Science and Engineering.
They discuss Sir Patrick Vallance’s role and work in the government, the areas that genomics is starting to touch on beyond healthcare and the use of genomic data. They also discuss the role of legislation and societal dialogue, they touched on the impact of the pandemic and how genomic sequencing is crucial to understand the spread of COVID-19. Sir Patrick Vallance also raised the importance of monitoring biodiversity and the impact on the environment.
|Apr 06, 2022|
Dr Stanley Crooke: Advancing the health of human beings around the world
“Let's talk about patients. That's where we have to always begin. This is about patients. I was tremendously impressed with how much the patient advocacy groups had accomplished, that helped us make judgments that are really complex and very dangerous judgments. All that played into the success. Then, of course, it was very rapidly approved around the world.”
In this week’s episode of The G Word, Dr Richard Scott, our Chief Medical Officer, is joined by Dr Stanley Crooke, M.D., Ph.D., the founder, chairman of the board and Chief Executive Officer of n-Lorem.
In this episode, Dr Scott and Dr Crooke discuss the foundation of n-Lorem, the importance of patient advocacy groups and the spinal muscular atrophy treatment Spinraza. They also discussed the value of whole genome sequencing in newborn screening.
|Mar 30, 2022|
Amanda Pichini: Genetic Counselling
“It's not just talking about a genetic test, testing parents to see if they're carriers after their child's been diagnosed or talking about reproductive options when people want to have another child - it's a lot more than that. It's navigating those difficult decisions in a situation where there’s a genetic risk or someone has been diagnosed with something and they need to know if it's going to have an impact on their life and future.”
In this week’s episode of The G Word, Chris Wigley is joined by Amanda Pichini, Clinical Lead for Genetic Counselling at Genomics England.
They discuss genetic counselling, The 100,000 Genomes Project and uncertainty in genomic medicine. They also discuss the impact of genomics on young people and her early career.
|Mar 23, 2022|
Charles Swanton: The evolution of cancer
“The tools that we have at our disposal now are just mind blowing - in terms of what we can do now compared to what we could during my PhD back in the mid 90s, when it would take you about three days to sequence the best part of 1000 base pairs. Now the number of genomes we can use every day, it's just extraordinary.”
In this week's episode of The G Word, Parker Moss is joined by Charles Swanton, Cancer Research UK’s Chief Clinician and Senior Group Leader at The Francis Crick Institute.
They discuss the evolution of cancer, eureka moments and cell cycle machinery. They also talk about The Francis Crick Institute and his early career.
|Mar 16, 2022|
Catherine Pollard: Why data is important in making things better for patients
“Clinicians are holding people's lives in their hands, and so for me data is about making sure they have all the information they need about where an individual comes from, their living circumstances and their family history, whilst also having the benefit of what clinical best practise will tell you to do or some of the large pattern analysis you can only do in very large populations.”
In this week's episode of The G Word, Chris Wigley is joined by Catherine Pollard, NHSX Director of Tech Policy and Curator of One Health Tech Cambridge Hub.
They discuss NHSX, involving patient groups in decision making and digital development in health and social care. The also talk about One Health Tech Cambridge and equality and diversity in health innovation.
|Mar 09, 2022|
Dr Misha Kapushesky: Human vs machine learning
“There are problems that we as humans have tackled that are extremely amenable to machine learning approaches, challenges like classifying things or, given a lot of data, making a prediction about the next step in that data. I am super excited about machine learning being able to tackle these challenges.”
In this week's episode of The G Word, Chris Wigley is joined by Misha Kapushesky, Chief Executive Officer and Founder of Genestack.
They discuss making data more accessible, his work with Genestack and data mining. They also talk about AI and machine learning and building trust.
|Mar 02, 2022|
Dr Neil Rajan and Dr Ruth Murphy: Dermatology and genomics
“The first step in the identification of any rare condition is recognising the features that lead to the diagnosis, something that’s easy to do if the person sitting in front of you has classic symptoms. However, in dermatology things are never that simple - somebody’s clinical presentation can be very, very subtle.”
In this week's episode of The G Word, Vivienne Parry is joined by Dr Neil Rajan, Honorary Consultant Dermatologist at Newcastle’s Royal Victoria Infirmary and Senior Lecturer at Newcastle University, and Dr Ruth Murphy, Consultant Dermatologist and former President of the British Association of Dermatologists.
They discuss undiagnosed skin conditions, cracking unsolved cases and the value of genomics. They also talk about how clinicians and patients can get involved and what the future holds.
|Feb 28, 2022|
Bilal Mateen and Evan Tachovsky: Diverse data
“We have huge imbalances in our data in the world of genomics, and datasets all over the world are dominated by individuals of European ancestry. By the time we get to the point where a dataset is imbalanced, its actually built on years if not decades of individual decisions and processes."
In this week's episode of The G Word, Maxine Mackintosh is joined by Bilal Mateen, Clinical Technology Lead at the Wellcome Trust, and Evan Tachovsky, Director and Lead Data Scientist at the Rockefeller Foundation.
They discuss funding and funders, the world of health and data science and imbalanced datasets. They also talk about their backgrounds and equity and diversity.
|Feb 16, 2022|
Empowering Women: A Celebration of the International Day of Women and Girls in Science
“Although there is this sense where you don't really find as many women in science, and when we get missed out of science, I think we have been really lucky and fortunate to work with incredible women in large numbers. We're quite lucky to find the experiences that we have.” […] “Life is so precious, we really shouldn't be spending any time doing things we don't enjoy.”
In this week's episode of The G Word, Dr Ellen Thomas, Clinical Director and Director of Quality at Genomics England, is joined by Arzoo Ahmed, Ethics Lead of the Newborn Genomes Programme, and Cassandra Smith, Senior Bioinformatician, both at Genomics England. Ellen worked on the delivery of the 100,000 Genomes Project and Cassie did her PhD using bioinformatics to study parts of mitochondria before joining the operations team at Genomics England. Arzoo completed her MPhil in Mediaeval Arabic Thought before moving onto the Nuffield Council on Bioethics and then joining the Ethics Team here at Genomics England.
In this discussion, these three brilliant women talk through their roles and what inspired them to pursue a career at Genomics England. In celebration of the International Day of Women and Girls in Science, they also discuss the challenges they have faced along the way and how being a woman has impacted their career.
|Feb 09, 2022|
Serena Nik-Zainal: Personalised treatment for cancer patients
“I hope it will happen in our lifetime, that we will start to learn how to use the totality of information that's available on tumours. And I don't just mean genomics, I mean any of it - including all the bits around the tumour, the microenvironment, the immune system. In the last 10 years alone, cancer research has grown phenomenally. It's been extraordinary to be involved in all of it. It's a very real privilege to be to be in this space.”
In this week's episode of The G Word, Chris Wigley is joined by Serena Nik-Zainal, a consultant in clinical genetics, a Cancer Research UK Advanced Clinical Scientist at the University of Cambridge and an Honorary Consultant in Clinical Genetics at Addenbrooke’s Hospital in Cambridge. She was the first woman to win the Josef Steiner Cancer Research Award in 2019.
Serena discusses sharing data, personalised treatment for cancer patients and the impact of the 100,000 Genomes Project. She also talks about the involvement of participants, cancer research and the need for genomic data diversity.
|Feb 02, 2022|
Ben Goldacre: The use and safety of data
“If you want to reduce suffering and death, you don't do that by depositing a PDF in a journal archive that gets read by eight people. You've got to go out there in the real world, you've got to change activity and behaviour.”
In this week's episode of The G Word, Chris Wigley is joined by Ben Goldacre, Director of TheDataLab at Oxford University, author and and lead on an upcoming review about better use of NHS data.
He discusses the use and safety of data, his book Bad Pharma and OpenSAFELY. He also talks about his early career and connecting data.
|Jan 26, 2022|
David Bick: Newborn sequencing
“We want to help families with rare conditions which are treatable and families with less rare conditions which are treatable. I think this equity is an important principle in terms of how we take care of children in the UK.”
In this week's episode of The G Word, Vivienne Parry is joined by David Bick, Clinical Advisor for the Newborn Genomes Programme and former Faculty Investigator and Chief Medical Officer at HudsonAlpha.
He discusses his experience with newborn sequencing, why whole genomes rather than exomes is the way forward and setting up a newborn programme. He also talks about what led him to genomics and the reasons he came to the UK.
|Jan 19, 2022|
Jessica Morley: Ethics and AI
“How do we better use big health data, both for the population’s health and for the health of individuals? There are an enormous number of ethical implications, and we must do our best to consider them.”
In this week’s episode of The G Word, Lyra Nightingale is joined by Jessica Morley, Policy Lead at Oxford DataLab, former Tech Advisor at the Department of Health and Social Care and specialist in ethics and AI.
Jessica discusses the gap between theory and practice in AI ethics, legislation and regulation in biotech and ethical mistakes versus ethical successes. She also discusses her background and her work with Oxford DataLab.
|Jan 13, 2022|
Dr Christina Waters: Patient involvement
“If we can identify more quickly what is going on with children, then we can treat them faster, and hopefully halt progression or have early intervention, or make a change, bring communities together, so we can understand what's similar and different across these different diseases.”
In this week’s episode of The G Word, Vivienne Parry is joined by Dr Christina Waters, Senior Vice President of Genomic Insights and Solution at Congenica and Founder of Rare Science, a non-profit that accelerates treatments for children with rare diseases.
Christina discusses her work with Rare Science, patient involvement and genetic interpretation. She also discusses her upbringing and the merits of industry.
|Jan 05, 2022|
Celebrating 2021: End of year highlights
“It’s been a fantastic year of conversations with an incredible cast of people, and we have learned so much from each of them. What our discussions show is we are on the right track but have plenty more to do in 2022 – and beyond. Thanks so much for joining our conversations, and hope to see you again for The G Word next year”
In this week’s episode of The G Word, Chris takes a look back at 2021.
He remembers chats with Dr Kenny Baillie, several members of the Participant Panel, Baroness Nicola Blackwood, Dr Adam Rutherford, Dr Natalie Banner and many more.
He recalls conversations about the need to view people holistically, consider their situations and hear their voices. He discusses lessons learnt about breaking stereotypes, getting young people into STEM, data, disabilities, long-term illness and patient choice.
He also talks about the podcast’s original aims: about how it was created earlier in the year to get more people familiar with genomics as a whole, in as many ways as possible, whether in the context of its use in medicine transparent and ethical use of people’s data, or innovation in the tech sector.
|Dec 29, 2021|
Matt Brown: How your environment impacts your genome
“Now, of course, we've got multiple new technologies coming around. Each of them is going to have areas where they're going to completely enable resolution of key aspects of diseases and lead to the development of much better understanding of disease pathogenesis, and ultimately to better treatment of diseases.”
In this week's episode of The G Word, Chris is joined Matt Brown, our new Chief Scientific Officer. Formerly Director of NIHR Guys and St Thomas’ BRC and Director of Genomics at Queensland University of Technology, he played a significant role in the development of genome-wide association study (GWAS) methodology and is a fellow of both the Australian Academy of Sciences and the Australian Academy of Health and Medical Sciences.
He discusses his priorities in his new role, how your environment impacts your genome and his hopes for 2022. He also talks about his early career and working with the Participant Panel.
|Dec 22, 2021|
Fyodor Urnov: Putting our ancestors in a Tesla
"We only learned to change human DNA 10 years ago; we as a species are 200,000 years old. So gene editing to treat disease is not even in its infancy - it's in its first minute of being born. To say that we have no idea whether to use it to make changes to future generations would be the understatement of all time. I mean, this is the equivalent of taking our ancestors who roamed Neolithic Europe and putting them in a Tesla."
In this week's episode of The G Word, Chris is joined by Fyodor Urnov, Director of Technology & Translation at the Innovative Genomics Institute and Professor of Molecular and Cell Biology at the University of California, Berkeley. Listed on the 2014 Thomson Reuters list as one of 'The World's Most Influential Scientific Minds', he has authored over 100 scientific publications, invented more than 130 US patents and won the Presidential Award for Excellence in Teaching at Brown University.
Fyodor discusses genome editing, his involvement in the US's effort to test for COVID-19 and CRISPR technology. He also talks about his education and academia.
|Dec 15, 2021|
Dr Harpreet Sood: Understanding communities
“If you really embed yourself in the community, embed yourself within the people that are going to be using a solution and try to understand from them what their pain points are, you build trust from the outset. You’re saying, ‘we're doing this for you and we're working together to do it’.”
In this week's episode of The G Word, Rakhi Rajani, our Chief Digital Officer, is joined by Dr Harpreet Sood, a primary care doctor and digital health expert. Formerly Associate Chief Clinical Information Officer (CCIO) and Senior Fellow to the CEO of NHS England, he is a board member at Health Education England (HEE), a trustee at the South Asian Health Foundation and Co-Founder of the NHS Digital Academy.
Harpreet discusses developing NHS England’s digital health and data strategy, his role at Health Education England and new models of primary care. He also talks about debunking Covid-19 vaccine myths and The South Asian Health Foundation.
|Dec 08, 2021|
Dr Maria Chatzou Dunford: Connecting data
“Our big mission and vision is to make sure that any data that can be used to cure these diseases is actually used. And we do that by connecting as much data as possible - as many types from as many different sources as we can find.”
In this week's episode of The G Word, Chris is joined by Dr Maria Chatzou Dunford, CEO and Co-Founder of Lifebit and expert in bioinformatics, medical informatics and high-performance computing. With a PhD in Biomedicine, she is also part of the developing team at Nextflow, a bioinformatics engineer at SciLifeLab and a passionate entrepreneur.
Maria discusses her work with Lifebit, founding multiple companies and advances in AI. She also talks about the rate at which genomic data is being generated and making data useable.
|Dec 01, 2021|
Dr Anna Lewis: How do we go about defining and conceptualising ancestry?
“We need some more conceptual clarity around ancestry so that we can build up some recommendations on how it should be used in genomic research.
There have been a lot of previous recommendations, around the use of race, ethnicity and ancestry in genetic research, but most don’t say much about ancestry. I think that it's fitting to get more of a conversation around it. I am really excited about the work Genomics England are doing to put an extra layer of logic around diversity.”
In our final episode of our Diverse Data Week on The G Word, Dr Anna Lewis, a scholar of Ethical, Legal and Social implications (ELSI) of Genomics, talks with Dr Maxine Mackintosh, our Diversity Programme Lead, about how we should go about defining, classifying and conceptualising ancestry. Together they discuss a range of common issues and potential solutions.
|Nov 26, 2021|
Dr Garrett Hellenthal: What can we learn about human history using DNA?
“It’s incredibly important that we build up reference data sets in other worldwide populations so that we can learn more about the ancestry of people.”
On today’s episode of The G Word, James Cook, one of our Bioinformaticians in Research Services at Genomics England, is joined by Dr Garrett Hellenthal, a Sir Henry Dale Fellow working on constructing and applying statistical methods to infer human history using genetic data at UCL Genetics Institute (UGI).
Today, Garrett and James talks about population genetics and diverse data. They discuss a recent study in which Garrett analysed data from Ethiopian populations to study the sociological features that lead to genetic differentiation among ethnicities and the People of the British Isles (PoBI), a project to create the first detailed genetic map of a country.
|Nov 25, 2021|
A Kitchen Conversation: Creating awareness with East Asians about genomics
“[Sophia at Genomics England] is trying to design new ways to get people of different backgrounds to understand what the database is, donate, and ensure that the data gets used.”
Joining us on today’s episode of The G Word is Sophia Luu’s family, interviewed by Sophia Luu herself, our Design Researcher on the Diverse Data Programme. She is joined by her grandfather, her grandmother, her father and her mother to discuss why not many people of East Asian descent are in our database.
During their discussion they touch on our Diverse Data Programme and the different groups of people missing in our dataset. They also discuss past experiences with doctors, abortion and the religious and cultural aspects of healthcare.
|Nov 24, 2021|
Dr Prabhu Arumugam: Could genomic research shed light on genetic influences in health disparity?
“Do diverse populations in genomic research help to facilitate new understanding? We are all one population, we should all have equal rights. The challenges are significant but they are not unsurmountable.”
In the second episode of our Diverse Data Week podcast series, Diksha Srivastava, our Implementation Lead in the Diverse Data Team, is joined by Prabhu Arumugam, our Strategic Partnerships Director. Prabhu’s key focus is on improving cancer clinical data and multimodal diagnostics in cancer for Genomics England. He is currently leading on the delivery of digital pathology and radiology with a view to improving clinical cancer data and advocating precision health.
Today, Prabhu discusses the genomic research landscape for diverse populations, including its historical barriers and how to address them. He also discusses disparities in genomic and biomedical research - in particular those impacting individuals of African, Asian and Hispanic ancestry - and the measures required to bring the benefits of genomic medicine to everyone.
|Nov 23, 2021|
Primrose Granville: The journey to better healthcare for everyone
“The journey of a thousand miles begins with one step. I believe we have made that step and that they are now becoming large strides.”
In this first episode, Dr Maxine Mackintosh, our Diverse Data Programme lead, speaks to Primrose Granville, an award-winning broadcaster, kidney recipient and community health campaigner leading a Black Heath Matters Programme on behalf of Genomics England in Bristol.
Primrose was born, raised and educated in Jamaica, migrating to the UK when she was 27 years old. Today, 25 years on, she is a journalist, presenter and producer on BCFM and a well-known figure at the heart of the African and Caribbean community in Bristol.
She was born with Polycystic Kidney Disease, as was her mother, grandmother, sister, son and probably several others in her family. She shares her personal journey, from having a kidney transplant to making it her life’s work to campaign for better healthcare for everyone. She also tells us why we need to change the narrative if we are to succeed in our ambitions to encourage people from all ethnicities to participate in medical research.
|Nov 22, 2021|
Jo Taylor: Bringing the patient voice to metastatic cancer issues
“We need to have these open and honest conversations with patients, because otherwise where is the duty of care? We're failing patients if we’re not being honest with them and saying, ‘there’s no evidence of disease at the moment, we believe that we've done everything that we can to make sure that the cancer doesn't come back, but unfortunately around 30% of people will develop secondary breast cancer and we don't know who they will be.’”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Jo Taylor, Chief Executive Officer and Founder of After Breast Cancer Diagnosis (ABCD), Founder of METUPUK and user involvement representative for Macmillan and GM Cancer.
Today Jo talks about her own inspirational cancer story, bringing the patient voice to metastatic cancer issues and personalised care. She also discusses her free book ‘Real stories by patients for patients’ and the Darker Pink campaign.
|Nov 17, 2021|
Nicola Blackwood: Genomic technologies and a diagnostic odyssey
“To be doing something with rare diseases is, for me, an absolute pleasure and a joy because there are too many people in this country who are still looking for a diagnosis and we’re doing something to help.”
In this week’s episode of The G Word, our Chief Executive Officer, Chris Wigley, is joined by Baroness Blackwood, member of the Lords Science and Tech Select Committee and Chair of Genomics England. Nicola was created a life peer as Baroness Blackwood of North Oxford and has chaired the Human Tissue Authority since 2018.
Today Nicola talks about her own 30-year diagnostic odyssey and how life changing the integration of genomic technologies into routine clinical care will be. She also discusses how important is it that we continue international collaboration for the future of genomic healthcare and what we need to work through as a society.
|Nov 12, 2021|
Deb Lancaster: Wrangling the research community
“Speaking as someone who's spent most of my career in Pharma, I know how important data is to bringing medicines to market, and to understand; where does the patient need a new treatment? How can that be targeted? How can discovery be pulled together so that you can actually give that patient a drug that's effective and safe?”
In this week’s episode of The G Word science podcast, our Head of Public Engagement, Vivienne Parry, is joined by Deb Lancaster, Service Owner in our Digital team at Genomics England, who makes sure that our researchers within the academic community and biotech industry, are able to interact with our data in an easy, simple and effective way.
Today Deb talks about the unique way that Genomics England is working with the NHS to build the Genomic Medicine Service, and our secure and safe Research Environment where researchers can work together for the benefit of participants and for patients in the future. Deb is also passionate about getting women and girls into STEM.
|Nov 03, 2021|
Dr Nick Sireau: The impact of patient groups
“What Findacure does is try to promote this concept of drug repurposing, and all the issues around there. That is another area of hope for rare diseases.”
In this week’s episode of The G Word #sciencepodcast, our Chief Executive Officer, Chris Wigley, is joined by Dr Nick Sireau, the CEO and Chairman of the AKU Society and Co-founder and Chairman of Findacure. Additionally, Nick is a fellow of the Ashoka global fellowship of social entrepreneurs.
Today Nick talks about alkaptonuria (AKU also known as “black bone disease”), an ultra-rare genetic disease that his two children have and the DevelopAKUre project that was established to improve the understanding of alkaptonuria. Chis and Nick discuss Findacure which Nick co-founded to share advice and knowledge between patient groups, they also talk about how patient groups help drug discovery.
|Oct 27, 2021|
Dr Robert Green: A Liberating Vision of the Future
“We have a wild card here that is changing the risk-benefit equation for all babies in order to detect these rare cases.”
In this week’s episode of The G Word #sciencepodcast, our Chief Executive Officer, Chris Wigley, is joined by Dr Robert Green, Professor of Medicine (Genetics) at Harvard Medical School and a physician-scientist who directs the G2P Research Program in translational genomics and health outcomes in the Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School. Additionally, Dr Green is principal investigator of the NIH-funded REVEAL Study and is internationally recognised for research and policy efforts accelerating the implementation of genomic/precision medicine.
Today Robert talks about his work around newborn sequencing with The BabySeq Project and what the programme is hoping to achieve. He also discusses Genomes2People and the research they conduct to accelerate the implementation of genomic medicine and the promise of precision health.
|Oct 07, 2021|
Emma McCargow: The Cutting-edge of Cancer Technology
“It’s extremely exciting from a research point of view because this really does offer that holistic view of the patient. […] The long-read sequencing technology and the activity that we’re doing with this multimodal data is really cutting-edge, it’s moving research forward, because we want to have a better experience for the patient and ensure they’ve got quicker diagnosis. […] There’s a potential that with the multimodal platform that there could be some genomic indicators for early detection of cancer. ”
In this week’s episode of The G Word #sciencepodcast, our Head of Public Engagement Vivienne Parry is joined by Emma McCargow, Programme Lead for the Cancer 2.0 programme. Emma is responsible for operating the day-to-day delivery of the strategic genomics agenda in Cancer 2.0, which includes maximising patient benefit and enhancing cancer research. Emma was also recently involved in our Innovation Showcase 2021 and was part of the Cancer 2.0 session – Integrating long-read sequencing technology and multimodal data.
Today Emma talks about how genomics gives us new insights into what’s happening with cancer and how this helps guide clinicians in how they decide to treat their patients. She also discusses long-read sequencing, and how this newly-developed technique has benefited studies and programmes and has given insight into various complex cancers.
|Sep 29, 2021|
Michelle Bishop: Genomics education and genetic counselling
“What I found about genetic counselling was that whilst you might learn about the science or the condition or inheritance patterns - things that may stay constant - depending on who you're seeing, the families that are coming in to see you or the patients that are coming in to see you will all have a different story.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Michelle Bishop, Education Development Lead for the Genomics Education Programme and council member at the British Society for Genetic Medicine. Having been involved in genetics and genomics education for over 15 years, Michelle has authored over 40 genomics education resources and 15 peer-reviewed papers, developed specialist NHS training curricula and competency frameworks and provided educational and clinical expertise to national projects as part of the NHS’s transformational adoption of genomic medicine.
Today Michelle talks about ensuring healthcare professionals have access to the right type of education and training, engaging with people beyond the scientific community and genetic counselling. She also discusses her background and her learner centred approach.
|Sep 23, 2021|
Prof Sir John Bell: The History of Genomics
“We're just at the cusp of the genetic therapeutics revolution, which I think will continue to sweep medicine for the next 15 to 20 years and will completely fundamentally change the way we think about treating all kinds of diseases.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Prof Sir John Bell, Regius Professor of Medicine at Oxford University. Prof Bell has been extensively involved in the development of research programmes in genomics and genetics as well in the development of a clinical research programme in the UK. He is the founder of the Wellcome Trust Centre for Human Genetics and is the founding director of three biotechnology start-up companies. As well as receiving a number of awards and honours, he has a number of charity positions and was selected to the Vaccine Taskforce in 2020. Prof Bell also assisted in the development of the 100,000 Genome Project at Genomics England.
Today John talks about the new operating model - Our Future Health. As the leader of the programme, he discusses how it has the potential to transform the way people are treated in cancer. He also discusses how new technologies have improved genomics and how they have transformed our thinking around cancer.
|Sep 15, 2021|
Holly Ellis: Breaking stereotypes
“I'm a great believer in ‘if you can see it, then you can be it’. So I wanted to really provide a role model for young women in STEM, because I feel like there's not a lot of representation for working class young women in science. I wanted young people to look at me and say ‘she’s from a working-class background and she’s got a strong scouse accent and if she’s a scientist then I can be too’.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Holly Ellis, Clinical Scientist in Genomics. On a mission to break stereotypes, Holly is the founder of ‘The Scouse Scientist’, a YouTube channel dedicated to demonstrating that science is for all, and in 2019 she completed the NHS Scientist Training Programme, including a MSc in Clinical Sciences (Genomics) from The University of Manchester.
Today Holly talks about her early career, her YouTube channel and getting more young people into STEM. She also discusses Rosalind Franklin and her commitment to breaking stereotypes.
|Sep 08, 2021|
Dr Hilary Martin: Diversity and data
“In most countries where there's large scale funding, ethnic minority populations are, by definition, minorities. And so in order to collect enough ethnic minority data in the given healthcare system, you really have to oversample those people. And in order to do that you need to have good public engagement programmes to persuade them to participate and to reassure them that you're going to look after their data responsibly.”
In this week’s episode of The G Word #sciencepodcast, Rich Scott is joined by Dr Hilary Martin, a group leader at the Wellcome Sanger Institute with a PhD in Human Genetics from Oxford University. Hilary’s research focuses on exploring genetic architecture in the Deciphering Developmental Disorders (DDD) study, with a particular focus on the role of rare recessive variants and polygenic risk.
Today Hilary talks about the diversity of genomic data, working with British Pakistani populations and consanguinity. She also discusses polygenic risk scores and the Deciphering Developmental Disorders (DDD) study.
|Sep 01, 2021|
Dr Euan Ashley: The power of answers
“The place where the genome has really had this massive impact over the last decade has been in rare disease, and in particular patients with undiagnosed disease. They are on these medical odysseys, often for years and years, going from doctor to doctor just accumulating emotional and financial burden without answers. The genome is such a powerful tool to solve these cases.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Dr Euan Ashley, Professor of Medicine and Genetics at Stanford University, Non-Executive Board Member at AstraZeneca and author. Euan led the team that carried out the first medical interpretation of a human genome and the first whole genome molecular autopsy and has co-founded numerous companies.
Today Euan talks about his book, ‘The Genome Odyssey,’ his group’s work on the first clinical interpretation of a human genome and his work with Personalis. He also discusses his interests during childhood and his early career.
|Aug 25, 2021|
Dr Mavis Machirori: Data, tech, justice and equalities
“Let's take a pause and think about what we know from history about health and social inequalities, and what the technology is doing to that. Is it making it better for some people? Is it making it worse?”
In this week’s episode of The G Word #sciencepodcast, Rich Scott is joined by Dr Mavis Machirori. Senior Researcher at the Ada Lovelace Institute, Mavis works at the intersection of data and tech and justice and equalities, with a particular interest in genomic data and the health and social inequalities that have emerged during the Covid pandemic.
Today Mavis talks about her work at the Ada Lovelace Institute, her background in midwifery and diversity. She also discusses what matters to people and misinformation during the pandemic.
|Aug 18, 2021|
Professor Dame Sue Hill: The field of genomics
“Since 1953, when DNA was discovered by Watson and Crick and supported by Franklin, the NHS had already been focusing on genetic diseases. From the 1960’s, NHS genetic labs were born. Since that time, with the initiation of the Human Genome Project, we got to understand that it was possible to sequence all 3 billion + letters - A, C, G, A T - a human genome.”
This week on The G Word, Chris Wigley is joined by Professor Dame Sue Hill, Chief Scientific Officer and Senior Responsible Officer for Genomics in NHS England.
Sue and Chris talk about how the field of genomics has gone from being a curiosity-driven science to being mainstream since we got first sight of the whole human genome 2 decades ago. They talk about the NHS Genomic Medicine Service, our recent public dialogue for genomics in newborn screening, and about predictive, preventive, personalised medicine.
|Aug 04, 2021|
Augusto Rendon: Bioinformatics at the Heart of Genomics England
"Within the wider framework of personalised medicine, trying to identify treatments, diagnosis, prognosis, that is about a personalised individual. Genomics plays a really important role because our genomes are unique. Bioinformatics is there to try to identify how those genomes are unique and what they tell us about the consequences of those differences."
In this week’s episode of The G Word #sciencepodcast, Anna Tomlinson, the Chief Communications and Engagement Officer at Genomics England, is joined by Augusto Rendon, the Chief Bioinformatician at Genomics England and the architect and facilitator of our bioinformatics infrastructure. Augusto has a wealth of experience in deploying whole genome sequencing in healthcare. He is a research scientist with a vast background in computational biology and statistical genomics and he coordinated the delivery of various bioinformatics and analytics solutions for the 100,000 Genomes Project.
Today, Augusto talks about the use and anonymisation of data, the role of bioinformatics at Genomics England, personalised treatments and the multidisciplinary aspect of bioinformatics.
|Jul 29, 2021|
Ewan Birney: The human genome
“It's not the number of genes that matter, it's how you use them - quite literally how you switch them on and off. There's a lot of complexity in the human genome, not in the types of genes, the building blocks, the types of Lego, but how you put that Lego together inside each cell, which genes are on and which are off. And, you know, it's still unclear just how all of that works.”
In this week’s episode of The G Word #sciencepodcast, Rich Scott is joined by Ewan Birney, bioinformatician, Deputy Director General of EMBL and Non-Executive Director at Genomics England. Ewan led the analysis of the Human Genome gene set, mouse and chicken genomes and the ENCODE project and his main areas of research include functional genomics, DNA algorithms, statistical methods to analyse genomic information and use of images for chromatin structure.
Today, Ewan talks about his work with the Human Genome Project, the sense of community amongst bioinformaticians and advances in leveraging genomic information. He also talks about which big topics don’t get enough attention and his research group.
|Jul 22, 2021|
Hopkins Van Mil: The Significance of Public Dialogue
“Public dialogue allows citizens, people, members of the public, people like you and me, and broader than that, to come together, to learn about an issue, to talk with specialists in that issue, to engage with each other in that space, and to consider a whole range of diverse perspectives.”
In this week’s episode of The G Word, our CEO Chris Wigley is joined by Henrietta Hopkins, the Director, Insight and Innovation at Hopkins Van Mil. Henrietta is an expert Lead Facilitator and designer of deliberative dialogue research with a particular interest in bringing creativity to public and stakeholder engagement and capacity building. Chris is also joined today by Suzannah Kinsella, Senior Associate at Hopkins Van Mil. She designs engagement activities that help people to influence policies and services in informed and constructive ways. They have both have been involved in a number of specialist dialogue projects run by Hopkins Van Mil, including The National Food Strategy public dialogue and Public dialogues for the Royal Society on gene editing, and neural interfaces.
Today, the group talks about public dialogue, genetic technology and the exploration of the potential for a newborn sequencing programme Hopkins Van Mil has been working on. They discuss how newborn sequencing can help understand the prevalence of rare diseases and develop treatments and how public dialogue allows people to learn, engage and talk to specialists.
|Jul 14, 2021|
Saskia Sanderson: Getting ordinary people to the table
“Why wouldn't we, as a society, seriously start debating the earliest appropriate age where we should start using genomics, not only for treatment and diagnosis, but also for prevention and facilitating earlier detection? Maybe for some it's 18, maybe for others it's childhood - but these are the sorts of questions that we should be debating.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Saskia Sanderson, Chief Behavioural Scientist at Our Future Health and chartered psychologist. Saskia has a particular interest in applying psychology to translate genomics into better ways to help others, is a freelancer at PHG Foundation and is former Senior Research Social Scientist at Great Ormond Street.
Today, Saskia talks about polygenic risk scores, how scientific research affects real people and sharing GP’s patient data. She also talks about her early career and how we can facilitate public debate.
|Jul 07, 2021|
Helen Stokes-Lampard: Social prescribing and equity of access
“I see a future where people's whole genome will be known at a very early stage in their life, and we will be able to look at social factors and health inequalities and target help and support earlier for those in greater need. There will be huge logistical challenges, of course, but this technology isn't going away, this is here. It's how we apply it for the greatest good that matters.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Helen Stokes-Lampard, Chair of the Academy of Medical Royal Colleges, Professor of GP Education at the University of Birmingham and Chair of the National Academy for Social Prescribing. Still a practising GP in Staffordshire, Helen is a huge advocate for mental health and has published several papers on women’s health and COVID-19.
Today, Helen talks about equity of access for patients, social prescribing and genomics. She also talks about her early career and her role as Chair of the Academy of Medical Royal Colleges.
|Jun 30, 2021|
GenOMICC COVID-19 Study: Genomics and COVID-19
“Most of the genome is the same for everyone, but there are some places where you can have some variation. This variation, in this case between the people who had severe COVID-19 and the general population, highlights certain areas of the genome. Our job is to try to understand this region.”
In this week’s episode of The G Word #sciencepodcast, our CEO Chris Wigley is joined by Erola Pairo-Castineira, Suzi Walker, Athanasios Kousathanas and Dorota Pasko, all members of a collaborative effort between Genomics England and the GenOMICC consortium, led by the University of Edinburgh, to utilise genomics to better understand the human response to COVID-19.
The group talk about the publication of their findings in Nature, whole genome sequencing and 100K participants and their value as validation cohort. They also talk about CloudRE and their plans for the future.
|Jun 23, 2021|
Dr Patrick Short: Revolutionising research
“It's a real power of some of the translational research that's being done that you can not only answer interesting, fundamental biological questions, but also impact people directly in the process.”
In this week’s episode of The G Word, our CEO Chris Wigley is joined by Dr Patrick Short, genomic researcher, bioinformatician and Co-Founder and CEO of Sano Genetics. For his PhD Patrick worked on the Deciphering Developmental Disorders (DDD) project, with his findings and methods being used in Genomics England's 100k analysis, and he has designed and taught courses on machine learning and data science at Cambridge Spark.
Today Patrick talks about the human aspect of research, precision medicine research and industry access to data. He also discusses the Deciphering Developmental Disorders project and his work with Sano Genetics.
|Jun 16, 2021|
Matt Clifford: Machine learning and start-ups
“What can machine learning do? You know, it's like having a million interns. It's not they can do everything that your core business needs to be able to do, but there are some things they can do very well. And if you can have a million of them, then there are things you can achieve that would be almost impossible to achieve with human scale, with normal numbers of people.”
In this week’s episode of The G Word, Chris Wigley is joined by Matt Clifford, co-founder and CEO of Entrepreneur First and board member at Code for Girls. Matt holds degrees from Cambridge and MIT, where he was a Kennedy Scholar, and was awarded an MBE for services to business in the 2016 Queen’s Birthday Honours.
Today, Matt talks about successful start-ups, tech developments within genomics and the value of investors. He also discusses his work with Entrepreneur First and the power of machine learning.
|Jun 09, 2021|
Christine Patch: The value of data
“Rare disease families really understand that data is important. Examining the family's genetics and bringing together groups of people with individual rare diseases to examine their genetics, and try and understand what's going on, has the potential to lead to both diagnosis and potential treatments. So they understand the power of data.”
In this week’s episode of The G Word, Chris Wigley is joined by Christine Patch, Clinical Lead for Genetic Counselling at Genomics England and Principal Staff Scientist in Genomic Counselling at the Society and Ethics Research group. An early advocate of genetic science, she became one of only 30 genetic nurses in the UK in 1989, and has subsequently worked as President of the European Society of Human Genetics and sat on the Human Genetics Commission.
Today, Christine talks about patient confidentiality and the code of duty, her early career in genetics and her role as Caldicott Guardian at Genomics England. She also discusses the intricacies of patient choice and the priorities for rare disease families.
|Jun 02, 2021|
Rebecca Skippage: Disinformation and the evolution of news
“The news media can do a lot better. Frankly, we need to reflect and represent different communities, and produce material that is more relevant to people who don't necessarily come from privileged backgrounds. Because I think that the way to engage people is to tell stories that have relevance to their lives, rather than this paternalistic ‘we speak, you listen’ approach we see now.”
In this week’s episode of The G Word, Chris Wigley is joined by Rebecca Skippage, News Editor and Anti-Disinformation Lead at the BBC. Having spent much of her career tackling misinformation, in 2020 she also founded a fellowship at Reuters Institute, established to explore best practice in communicating with global audiences and to encourage people to utilise public service media networks.
Today, Rebecca discusses why people from less privileged backgrounds are significantly less likely to turn to news media, how the BBC combats fake news and the importance of social listening. She also talks about her eye-opening report ‘The role of public service media in the fight against disinformation’ and touches on the usefulness of WhatsApp and other similar media platforms.
|May 26, 2021|
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.
|May 19, 2021|
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.
|May 12, 2021|
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.
|May 05, 2021|
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.
|Apr 28, 2021|
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.
|Apr 21, 2021|
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.
|Apr 14, 2021|
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.
|Apr 07, 2021|
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.
|Mar 31, 2021|
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.
|Mar 24, 2021|
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.
|Mar 17, 2021|
Dave McCormick: Embedding the patient voice
“This is about developing a balance between quantitative and qualitative perspective, it isn't just about the data - the data is important, of course it is - but it's also the lived patient experience. Both are key.”
In this week’s episode of The G Word, Chris Wigley is joined by Dave McCormick, who has been a member of the Genomics England Participant Panel since 2017 and became a participant in the 100,000 Genomes Project due to his rare sight condition. Dave is also an Advisor on the MSc in Genomic Sciences at The University of Manchester, and a Patient Representative in North West GLH Clinical Advisory Group.
In this episode, Dave and Chris discuss why is it so important for people studying to become bioinformaticians or clinical scientists to embed the patient voice, getting healthcare professionals and scientists to talk to people in lay language and DIGVIP (Digital Inclusion on Genomics with Visually-Impaired People), a webinar series launched to try to bring research and patients closer together.
|Mar 10, 2021|
Prof Ting Wu: The beauty of the genome
"A person's experience can actually alter our genetic material and have it passed on. So what could some of those alterations be, that children can inherit, and for generations after that?"
Professor Ting Wu is a molecular biologist with a passion for genetics, space and education. Unravelling the mystery of genes could lead us to understanding what children inherit from their parents, why genetic diseases develop, and how we may be able to improve the outcomes for - and potentially reduce the likelihood of - these diseases.
And though it may sound like science fiction, what we learn about genetics could even help us in space travel - Ting tells Chris about her group investigating the effects of extreme environments on the human genome and how we can protect it against radiation damage.
|Mar 03, 2021|
Prof Tim Hubbard: Making the impossible possible
"Humans are fantastically complicated, with 37 trillion cells and we don’t even know how many different cell types there are. But’s there’s a place to build from now. Having AlphaFold is like having a Rosetta Stone to translate; you couldn’t read the language of proteins - sequence defining structure and function - before."
Tim Hubbard is a Professor of Bioinformatics, Head of the Department of Medical and Molecular Genetics at King's College London, and also a Senior Advisor to Genomics England. And no wonder, with so many achievements under his belt; Tim has had a vital role in the Human Genome Project - where the first human genome was mapped and annotated in Ensembl and Gencode - as well as in co-organising Critical Assessment of Structure Prediction (CASP) competitions for several years.
In this episode, Tim tells Chris about how he first got hooked on bioinformatics before it was formalised as a field, and how the breakthrough with AlphaFold means a better understanding between genomics and healthcare.
Find out more about AlphaFold, the AI system that has made a huge scientific breakthrough and solved a 50-year grand challenge.
|Feb 24, 2021|
Dr Charles Steward: Education through discussion
"I would like genomics to be more spoken about. There's still a concern that genomics is going to be used to get rid of certain types of disorders, but it has an enormous potential to make everyone's lives better. Understanding genomics is a really important thing."
Driven by his infant daughter's rare form of epilepsy, Charlie established an international collaboration to investigate with new technology how genetics might be affecting her and other children with severe epilepsy.
Charlie Steward is a passionate patient advocate thanks to where life has led him and his family - starting as an academic researcher in genomics and then, after his children were born, becoming a Patient Advocacy and Engagement Lead at Congenica, ideally putting him in a position to bridge the gap between research and patients.
|Feb 17, 2021|
Matt Hancock: Using data to improve people's lives
"Giving people the confidence and capabilities to use data to find insights that can then improve lives is absolutely central to what we need to do over the years to come."
Chris spoke to Matt Hancock, Secretary of State for Health and Social Care, at the end of 2020, reflecting on the UK's response to the COVID-19 pandemic so far and discussing how data - used appropriately and correctly - is the key to improving mainstream healthcare and, ultimately, people's daily lives.
|Feb 10, 2021|
Prof Anna Middleton: Starting genomic conversations with X-Men
"What is a good deal for both sides? This isn't about science taking from people. This is about science genuinely offering a partnership."
How do we engage people in science and trickier subjects like genomics?
Professor Anna Middleton is a social scientist and genetic counsellor.
In this episode, Chris and Anna explore ways to springboard genomics into people's awareness and engaging in a two-way conversation about it, especially when genomics might already be part of their lives in ways they don't realise.
|Feb 03, 2021|
Dr Kenneth Baillie: The war against COVID
"Since the beginning of the outbreak, we've had literally hundreds of drugs on the table available to us that will target the immune system, to try to stop lung damage and COVID. And really, very little hard evidence on which to base the decision about which one to use next, and genetics really does lead us."
Doing one of the most important jobs during the COVID-19 pandemic, Dr Kenneth Baillie is not only looking after patients in intensive care, but also looking at why some people are having such severe reactions to the SARS-CoV-2 virus.
In this episode, Chris and Kenny cover how he made the jump from studying the effects of going up mountains on the human body, to helping critically ill people and their families at the most difficult times in their lives.
|Jan 27, 2021|
Dr Eric Topol: It's their data, not ours
"Eventually, it'll be pervasive and we won't even use the term 'genomic medicine' because it will be medicine."
Dr Eric Topol, Director and Founder of the Scripps Research Translational Institute, is one of science’s most innovative thinkers, a leading physician, and author of The Topol Review. In our first episode, Chris and Eric talk about the evolution of genomics, the importance of patients being at the heart of decision-making, and how they deserve to be given better insights about their healthcare.
|Jan 19, 2021|
The G Word: Preview
Join Chris Wigley, CEO of Genomics England, for discussions about all things genomics.
|Jan 13, 2021|