From a blank piece of paper to part of the culture: Building a Participant Panel

As our time on the Participant Panel comes to an end, we have been thinking a lot about how much we have enjoyed it. Plenty has been written elsewhere about what the Panel has achieved so far, and the next generation Panel are in great shape to achieve even more in the years ahead.

In this blog, we reflect on how much this experience has meant to us and the other Panel members stepping down.

We as Panel members are our lived experience first, and advocates second. There are always silent but powerful members around our table, and we each bring a crowd with us. Those who we love and those who we’ve lost, and all the many different communities we represent all come through the door. Never has a room been so full.

From day one, the room has been full of shared experience, shared pain, shared challenges and shared hope. We bring ALL of ourselves to the table so that we may represent ALL of our community.

Part of the DNA of Genomics England

From our blank piece of paper, we have created a panel and a patient voice that has become part of the culture and infrastructure of Genomics England.

This is our greatest achievement, and this was only realised through partnership and collaboration - and the vision and unwavering support of Prof Dame Sue Hill, Prof Sir Mark Caulfield, Prof Dame Sally Davies and our champion Vivienne Parry, who believed in us when at the start we didn’t quite believe in ourselves.

These people gave us the space, agency and ultimately the ‘power’ to become who we are today, serving a growing patient community. We are not equal players if we don’t have the agency to say no. Though whilst we have that, our mission and desire is to always enable and say yes, where we can.

Our lived experience is a rare asset, and one which Genomics England is better and stronger for having. From curiosity to collaboration, we have grown together, built on our genes, powered by innovation, guided by our hearts and minds. The Panel is now firmly part of Genomics England’s DNA.

Boots to the moon

There has always been a natural tension inside the Panel as Genomics England rightfully moves forward with exciting and transformational genomic plans and initiatives.

We have always fully supported their ambition and their mission for more discovery and for more patient benefit. That said, we as a Panel have always urged the Board and the Executive to look at their boots while shooting for the moon.

We know that the Panel will continue to fill that space between the moon and the ground, and to advocate for all participants and patients, both yesterday’s recruits and tomorrow’s targets.

This will be especially important as the ethical debates and the public discussions continue on hot topics such as AI, data federation and data sharing, the value of a lifetime genome, and child to adult consent processes for the Generation Study cohort (perhaps even consider a junior participant panel at an appropriate time) and so much more.

As public attitudes change and exciting discoveries continue, the Panel will stand strong and amplify the voices of participant communities to ensure we leave no one behind on the genomic journey. And will always ask those difficult questions!

Thank you to our founding members

A special thank you to our other longstanding members stepping down around this time. Their dedication, commitment and hard work over the years has made a huge difference and we wish Peter Hopper, Kate Grafton, Helen Mendis, Andy Hart, Alex Brownrigg, Cecily Berryman and Dominque Stephens the very best. We thank them for their guidance, patient expertise and valued insights over the past eight years.

Join the panel and help steer the journey

There will be another round of recruitment for the Participant Panel before the end of this year.

If you are interested, and have agreed to share your own whole genome sequence in the National Genomics Research Library, email [email protected] and they will let you know when applications are open.

With very best wishes,

Rebecca and Jillian