Genomics England today announces several leadership changes to the Participant Panel, including the departure of two of the Panel’s longstanding and valued leaders after eight years of remarkable impact, as well as the appointment of a new Vice-Chair for Rare Conditions.

Adam Clatworthy will succeed Rebecca Middleton as Vice-Chair for Rare Conditions, following a rigorous recruitment process. The Panel Chair, Jillian Hastings Ward, is also stepping down. Helen White, the Panel Vice-Chair for Cancer, will join Adam in providing interim leadership until a successor has been appointed.

Formed in 2016, the independent Participant Panel is a key advisory group for Genomics England, working to ensure that the voices of participants, their families and their experiences inform its work. It is made up of a diverse group of people who have consented to donating their or a family member’s data to the National Genomic Research Library and who bring their lived experiences of rare conditions or cancer.

As part of his role, Adam will be supporting the Panel in working closely with the Panel’s other Vice-Chair, Helen, as well as staff across Genomics England to ensure that the exciting potential of genomics research is understood and truly benefits the patient and participant community.

He will be building on the significant progress made by Rebecca and Jillian – who are both stepping down from their positions at the end of June.

Jillian and Rebecca have been longstanding members of the Participant Panel, with their important contributions over the years clear to see across Genomics England and its work. They have been instrumental in the Panel’s evolution and ensuring the highest standards of data governance and the meaningful involvement of participants in all that Genomics England does.

"As the father of two children diagnosed with a rare condition, I’ve experienced firsthand the challenges that families face. I'm deeply committed to making a positive impact and ensuring those affected by rare conditions feel supported and empowered on their diagnostic journey.

I am honoured to take on this role and continue the exceptional work of Rebecca and Jillian over the past eight years. It's a privilege to represent our community, and I firmly believe that prioritising the lived experiences of participants is crucial as we harness the potential of genomics to improve lives."

Adam Clatworthy

“I’m delighted that Adam is joining the Panel leadership team, where I am sure he’ll make a great start in partnership with Helen. The Panel’s main remit has always been to bring our lived experience into discussions about how genomics works for the communities we represent, and it’s clear that Adam is already a very effective advocate.

When I first joined the Panel, I could never have imagined what an inspiring and impactful force for good it would become. It is testament to all the passionate, driven advocates who have served on the Panel, and the supportive team at Genomics England who have listened to our challenges and taken them forward, that we have been able to shape its remit together for the benefit of our cancer and rare conditions communities. I’d like to thank Rebecca Middleton for being such an excellent Vice Chair, and wish Helen and Adam the best of luck for this next chapter of the Panel’s history.”

Jillian Hastings Ward

“From our first meeting 2016, the Participant Panel has worked tirelessly for the interests of our communities. From a 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 and is respected by our wider ecosystem. We created this through partnership, collaboration and a shared mission to firmly place the patient voice at the heart of Genomics England, guiding its strategy, innovation, diagnostic discovery and research.

“It has been a privilege and honour to be part of Genomics England’s journey and work alongside the committed patient advocates of our Panel and our Chair, Jillian Hastings Ward. I’m so proud of all we have achieved, and I look forward to the Panel and Genomics England keeping hope on the horizon while moving forward into its next phase of discovery, engagement and strategic patient involvement. I would like to thank Genomics England for this life-changing opportunity and wish Adam, Helen and all our Panel the very best of luck.”

Rebecca Middleton

“I am deeply grateful to Jillian and Rebecca for their remarkable contributions in building the Panel and their pivotal role in its achievements. They have laid a rock-solid foundation for our next chapter.

"I am thrilled to welcome Adam to the team. His extensive skills and experience will undoubtedly enhance our efforts and drive the Panel’s continued success.

"I look forward immensely to working with Adam and the Panel to ensure that the interests of participants and patients remain firmly at the forefront of everything that Genomics England does.”

Helen White

“We’re delighted that Adam will be taking up this position on the Participant Panel. I know that he will have incredibly valuable insights and perspectives to help shape all that Genomics England does.

“I would also like to thank Jillian and Rebecca for their tireless work, for all that they have achieved, and for their courage and unwavering dedication to representing those with rare conditions. They have played an enormous role in putting the Participant Panel at the heart of Genomics England and its culture. We’ve been incredibly lucky to have had two fantastic partners on our work towards helping everyone benefit from genomic healthcare. I wish them all the best for the future.”

Dr Rich Scott

Chief Executive Officer of Genomics England

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