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The latest from the Participant Panel

Update May 23

By Jillian Hastings Ward on

New additions

The Participant Panel recently held its first meeting at the new Genomics England HQ, in Canary Wharf. Those of us who were able to attend in person marvelled at the shiny foyer and the view from the twenty-first floor, before getting stuck into a really heavyweight agenda with our colleagues across the country online. This was also our first meeting with not one but two Vice Chairs: Helen White has recently been appointed Vice Chair for Cancer, to complement the skills and expertise of our Vice Chair for Rare Conditions, Rebecca Middleton. I’m excited to see what Helen will be developing over the coming months to strengthen patient involvement in Genomics England’s cancer programmes.

CEO update

We heard from Chris Wigley, CEO of Genomics England, about his five priorities for the coming year and discussed where the Participant Panel can add most value. We were able to share our perspectives, as patients and family members with lived experience of rare conditions and cancer. Our connections into the wider communities served by Genomics England mean that we can report back directly on the implementation of their initiatives, in ways that the project leadership might not otherwise get to hear about. This is valuable to them, and to us.

Chris was also able to tell us about a recent collaboration between Genomics England and one of their pharmaceutical partners who have together identified a new possible drug target for a common disease, thanks to the participant data that is held in the National Genomics Research Library (NGRL). This kind of progress is what we all hoped for when we signed up to share our whole genome sequences for medical research, so it’s very exciting to hear that this is now happening.

We also heard from Rich Scott, Deputy CEO of Genomics England and Chief Medical Officer, about the progress that Genomics England and its partners continue to make in returning more diagnoses to patients and families who signed up for the 100,000 Genomes Project with rare conditions. The team are continually searching for new leads, and several hundred are reported back to the NHS for verification every month. We are strongly supportive of this ‘diagnostic discovery’ work, as it demonstrates Genomics England’s ongoing support for the original participants in the 100,000 Genomes Project, as well as all the NHS Genomic Medicine Service patients who sign up to include their whole genomes in the NGRL from now onwards.

Creating solutions

We were delighted to be joined by Matt Brown, Chief Scientist at Genomics England, along with Mark Effingham and Naomi Allen from UK BioBank, for a discussion about how to ensure that they handle data appropriately for participants who have signed up for the UK BioBank as well as for the NGRL. We all want to maximise the effectiveness of the scientific and medical research that happens in these two great libraries, so developing a confidential way for researchers to spot any possible duplication between them is really important. The Panel asked a number of insightful questions about the proposed approach, which have resulted in the development of a solution that works for everyone.

One of my favourite sessions in Panel meetings is when we go around the table to hear how Panel members have been contributing to the other committees within Genomics England, and to relevant genomics activities across England. It’s a great opportunity to catch up on developments and to remind ourselves of the complexity of the ‘genomics ecosystem’ in which we seek to make a difference!

New members wanted

Over the summer, we will be inviting potential new Panel members to apply to join us. We are looking for a wide variety of patients and family members from across England, who have consented to share their whole genome sequence for research in the NGRL. An application pack with further details will be available soon. In the meantime, if you have any questions or comments, we’d love to hear from you at [email protected]

Thanks for reading!

Jillian Hastings Ward, Chair of the Participant Panel

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