Behind the Genes

The Errol McKellar Foundation and friends of Caswell Thompson: Prostate cancer awareness

The Errol McKellar Foundation focuses on giving presentations and talks around the UK to raise the awareness of important men’s health issues, especially prostate cancer. Friends of Caswell Thompson (FOCT) is an organisation set up for, and dedicated to, raising awareness about prostate cancer in the BAME communities in Bristol and surrounding towns and villages through a range of activities, with a particular focus on reaching black men, in whom the incidence of prostate cancer is 1 in 4, compared with 1 in 8 in the general population.

You can read our transcript here: The-Errol-McKellar-Foundation-and-friends-of-Caswell-Thompson.docx 

 

"The fear of knowing vs. the fear of doing nothing."

Marie Nugent, Community Manager for Diverse Data at Genomics England, is joined by Errol McKellar, MBE, founder of the Errol McKellar Foundation, and the MOT yourself campaign, and Errol Thompson and Errol Campbell, Directors of Friends of Caswell Thompson, who are dedicated to supporting families affected by prostate cancer in and around Bristol. Today, we'll be hearing about the impact these two incredible companies are having in raising awareness of prostate cancer risk in the communities. 

Professor Anneke Lucassen and Dr Faranak Hardcastle: Why data isn’t neutral

Today, on The G Word, Lyra Nightingale, our ethics lead at Genomics England, is joined by Professor Anneke Lucassen and Dr Faranak Hardcastle in a deep discussion about ethics and data. They discuss the neutrality of data, cultural humility in research, the role of structural racism in science and the role of co-production in diversity.

You can read our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Professor-Anneke-Lucassen-and-Dr-Faranak-Hardcastle.docx   

 

"Data is not neutral, or objective, because they don't exist in a vacuum. And they are produced by processes that we put them through, we curate them, we select them, collect them, clean them, edit them, and classify them and then end up analysing them."

References:

1. Bowker, Geoffrey C., and Susan Leigh Star. Sorting things out: Classification and its consequences. MIT press, 2000.
2. Gitelman, Lisa, ed. Raw data is an oxymoron. MIT press, 2013.
3. Ruppert, Evelyn, and Stephan Scheel, eds. Data practices: Making up a European people. MIT Press, 2021.

The Participant Panel: What are you doing to keep my data safe?

What is the impact of the participant data from the 100,000 Genomes Project? Rebecca Middleton and Jillian Hastings Ward explore these questions and discuss how the science has evolved at Genomics England with our CEO, Chris Wigley, Head of Translational Genomics, Dr Suzi Walker (a.k.a. the gene detective!) and Clinical Director and Director of Quality, Dr Ellen Thomas.

We are taking you back to the Reanalysis Webinar for Participants, where Jillian, Chair of the Participant Panel, and Rebecca, Vice Chair of the Participant Panel, asked Chris, Suzi and Ellen questions that the participants had about Genomics England's approach to reanalysis. Hear directly from participants of the 100,000 Genomes Project! 

 

You can read our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Reanalyis-Webinar.docx 

 

''What should I do? Should I have another test? If so, what test should I have? What should be my next steps?''

The Participant Panel at Genomics England is currently looking for new members. Email us at participantpanel@genomicsengland.co.uk to apply and find out more.

 

Chris Wigley: Goodbye 2022, hello 2023!

As we draw a close to 2022, Chris Wigley takes us through the best parts of the year in this short but sweet episode of The G Word. From our 10-year anniversary to GERS 2022 to our inspiring patient stories, Genomics England has achieved many milestones this year. We have enjoyed the privilege to speak to so many incredible people from across the world to talk about what we love most, genomics. 

 

Thank you to our wonderful listeners, see you in 2023!

 

You can read our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/End-of-year-transcript.docx 

 

Nicola Perrin: Making research relevant to the user

Nicola Perrin MBE, who is a new non-executive director on the Genomics England Board, has also recently been appointed to the Board of UK Biobank, as well as being the CEO of the Association of Medical Research Charities that AMRC, an organisation that brings together and supports over 150 health and medical charities to enable and support high-quality research.

View our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Nicola-Perrin.docx  

 

"Don't underestimate the power of mothers on a mission!"

Today on The G Word, Chris Wigley and Nicola Perrin MBE discuss all things life science, data and the importance of engaging users in research.

Vivienne Parry, Jillian Hastings Ward and Mark Caulfield: The last 10 years and the next...

This week we are celebrating the 10-year anniversary of the announcement of the 100,000 Genomes Project.

To mark this ground-breaking project, our Head of Public Engagement, Vivienne Parry OBE, is joined by two guests who have played a critical role over the last 10 years: Professor Sir Mark Caulfield, who led the strategic oversight and delivery of the project, and Jillian Hastings Ward, Chair of the Participant Panel at Genomics England. Jillian and her family joined the project in 2015, in search of answers for her young son who is severely disabled.

Tune in to hear Jillian and Mark discuss their highlights over the last 10 years, how Genomics England has grown as an organisation and what they think the future of genomics holds.

 

You can read our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/10-years-of-100K-Project.docx 

 

“Thanks to the 100,000 Genomes Project, Sam was the first person diagnosed in the mainstream NHS in England with a GRIN1 genetic disorder. That's been wonderful for us to know, as a family, who else we can find around the world with the same condition. But also, I'm really delighted that GRIN1 genes were added to the gene panels that the teams were using to diagnose more people as a consequence directly of the 100,000 Genomes Project. That's meant that we've been able to find a lot more since then, who shared the same condition. Hopefully, in due course, we'll have enough people that we can get more researchers interested and make real progress together."

Rob Annan: Conversations with the CEOs of genomics

Genome Canada is an independent, federally funded not-for-profit organisation and a national leader for Canada’s genomics ecosystem. Working in partnership, and across sectors, they invest in, and coordinate, genomics research, innovation, data and talent to generate solutions to today’s biggest challenges. CEO Rob Annan joins us in an inspiring and fascinating discussion. 

 

You can view our Transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Rob-Annan.docx 

 

"We do work in health, but we work beyond health."

 

Today on The G Word, Genomics England's CEO Chris Wigley meets Rob Annan, CEO of Genome Canada. They discuss challenges in sharing genomic data in Canada, working with indigenous communities in the north of Canada, and Rob's 'manifesto' for the future. 

Vivienne Parry and Professor Dame Sue Hill: The Genomics England Research Summit

Another brilliant session from the last genomics England Research Summit, where Chris Wigley spoke with Professor Dame Sue Hill and Vivienne Parry, about the state of genomics research and the pathway to clinical implementation. What does it take to scale an idea like whole genome sequencing diagnostics across an entire health service? 

 

You can find our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Genomics-England-Research-Summit-2.docx 

 

"the NHS is both the producer and the consumer of innovation"

 

On todays episode of The G Word, Chris Wigley is joined by Vivienne Parry, our Head of Public Engagement and Professor Dame Sue Hill at our 2022 Genomics England Research Summit. They discuss what genomic testing means for both clinicians and patients, how we measure equity of access and patient stories from the 100,000 Genome Project. 

Amanda Pichini: What role do genetic counsellors play in healthcare?

Genetic counsellors are a highly specialised group of healthcare professionals, who have the expertise to help patients and families understand complex information relating to genomics, as well as provide guidance and emotional support. Whether that's to understand their family history, make informed choices about genetic testing, or come to terms with a result or a new diagnosis. As genomics becomes more commonly used in health care, more and more people are likely to require genetic counselling and more healthcare professionals need to rely on their expertise.

 

You can find our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Genetic-Counsellors.docx 

 

"What we're really here for, is to be able to explain something that's really quite complicated science, and how that fits into your life, your family, your values and your decision-making."

 

Today on The G Word, Amanda Pichini, Clinical Lead for Genetic Counselling at Genomics England, is joined by Dave McCormack, member of the participant panel to Genomics England, Sara Levine, consultant, a genetic counsellor at the Centre for reproductive and genetic health and chair of the Association of genetic nurses and counsellors. Janice Bailey, a cardiology clinical nurse specialist and preregistration genetic counsellor, and Heather Pierce, a genetic counsellor with a neural net Project at the University of Cambridge.

Jillian Hastings Ward and Baroness Nicola Blackwood: The Genomics England Research Summit

The Genomics England Research Summit is an exciting one-day event that explores the latest research and technology innovations from Genomics England, partners, and complementary fields. The summit covers all things genetics from Cancer Genomics, Emerging Technologies, Rare Diseases to Policies and Initiatives.

 

You can view our transcript, here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Genomics-England-Research-Summit.docx 

 

"...one of the most important things is to understand you have to build a sustainable system and really invest in building those relationships."

 

Today on The G Word, we're very excited to share one of the brilliant sessions from the last Genomics England Research Summit, where Jillian Hastings Ward, who is the chair of our Participant Panel, spoke with Baroness Nicola Blackwood, who's the Chair of the Board at Genomics England, about the importance of patients being at the heart of the research.