Behind the Genes

“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, 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.

“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, 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. 

"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, 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.

“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, 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.  

“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, 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. 

“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, 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. 

“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, 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. 

“[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 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.

“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. 

“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, 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.