Behind the Genes

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.

Siddhartha Mukherjee: The song of the cell

A doctor, a scientist, an entrepreneur, and a Pulitzer Prize-winning author is Siddhartha Mukherjee. His new book is called 'The Song of the Cell, An Exploration of Medicine and the New Human'. Siddhartha Mukherjee is a cancer physician and researcher. He is an assistant professor of medicine at Columbia University and a staff cancer physician at Columbia University Medical Center. A Rhodes scholar, he graduated from Stanford University, University of Oxford, Harvard Medical School. He has published articles in Nature, The New England Journal of Medicine, The New York Times, and The New Republic.

 

You can view our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/Siddhartha-Mukherjee.docx 

 

"A gene, as you know, is extraordinarily important. It's a carrier of information. But it's lifeless. Without a cell, a gene is a molecule, a cell brings it to life."

 

Today on The G Word, Parker Moss, our Chief Partnership Officer is joined by Siddhartha Mukherjee. They Discuss Siddhartha's new book release covering some of the main insights into his lab research and personal life. They also discuss other scientific areas of research .

Martin Mendoza: Health equity engagement of special populations

Before joining All of Us, Martin Mendoza served as director of the Division of Policy and Data at the Office of Minority Health in the Office of the Secretary at the U.S. Department of Health and Human Services, charged with developing health policies and initiatives to eliminate health disparities and advance health equity.

 

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

 

"Information can then help to improve the ways to diagnose, prevent, and treat health conditions and lead to improved health for hopefully generations to come."

 

Today on The G Word, Maxine Mackintosh, programme lead for Diverse Data at Genomics England, is joined by Martin Mendoza, Director of Health Equity at All of Us. They discuss the need for health equity engagement of special populations and the impact of the pandemic. 

Mai Shehab, Zaynah Asad and Aman Ali: The Muslim Census

Muslim Census surveyed 1,007 Muslims aged 18-65+ living in the UK to understand whether these pre-conceptions about Muslim’s attitudes towards health research and genomics more broadly, as well as health information, are based in fact. Our aim is for the findings to help explore how to engage with Muslims to increase Muslim representation in genetic research. Aman Ali, one of Genomics England's proud ambassadors is joined by two health researchers from Muslim Census, Mai Shehab and Zaynah Asad. They discuss the lack of representation in the Muslim community and how and why this must change in order to benefit the future of healthcare. 

 

You can find our transcript here: https://files.genomicsengland.co.uk/documents/Podcast-transcripts/The-Muslim-Census.docx 

 

"Over 70% of our respondents said that they were hopeful about where developments in science and tech are going. It shows a willingness to learn more and participate more."

 

Mai Shehab and Zaynah Asad joined Aman Ali, one of our ambassadors, at the Genomics England Research Summit 2022. They discussed the lack of Muslim representation in genetic and genomics research, the lack of knowledge of genomic terminology and genomics generally in Muslim communities and what genomics England need to do to change these figures and engage more ethnic communities in studies. 

 

 

Kate Grafton: Not quantity of life, quality of life

This Breast Cancer Awareness Month, Kate Grafton shares her journey with breast cancer at the Genomics England Research Summit hosted earlier this year. She talks living with breast cancer and the side effects of cancer treatments and the importance of engaging with the patient community. If you're a researcher wanting to understand how and where to connect with your patients, listen to this episode. 

 

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

 

"We want to work with you to look at how can we make kinder treatments and how can we have longevity. I don't just want quantity of life, I want quality of life."

 

Kate has been living with secondary breast cancer since 2011 and is a member of ARC as part of her role as a representative of the Participant Panel. She has an active role with several national breast cancer support groups, has successfully campaigned for fair access to cancer interventions and has sat as an expert patient on the Leeds Teaching Hospitals NHS Trust cancer patient forum.

Kate is a HCPC and CSP registered physiotherapist with a specialist clinical background in ICU and surgical oncology. She is currently a Principal Lecturer in Physiotherapy at Leeds Beckett University and has undertaken and supervised numerous NHS based clinical research projects. Kate hopes to bring to ARC her knowledge and experience as a long term cancer patient and be a voice for others with an incurable cancer diagnosis.