How is genomic research being guided by patient and participant voices?

In this episode, we celebrate 10 years of the Participant Panel and explore how genomic research is being guided by patient and participant voices.

Made up of people who have consented for their genome, or the genome of their loved one, to be included in the National Genomics Research Library, the Panel plays a vital role in shaping how research is designed, how data is used, and how genomics is communicated. From influencing policy discussions to to advising the Genomics England board, their work helps ensure lived experience is embedded from the very beginning.

Over the past decade, the Panel has driven meaningful change. From advocating for greater transparency and accessibility, to challenging how the genomics community talks about genetic conditions. But beyond the impact, this episode focuses on the people behind the work: their motivations, experiences, and the realities of representing a wider community.

Our host, Sharon Jones is joined by:

Kirsty Irvine – Chair of the Participant Panel and member of the NHS Genomic Medical Service People and Communities Forum

Lisa Beaton - member of the Participant Panel, panel member for the North East and Yorkshire GMSA and research and development for Harrogate Hospital Foundation Trust

Frances Allan – member of the Participant Panel and member of the following:

CRUK Women+s Cancers PPIE at Cambridge

MHRA Yellowcard Biobank

Northumberland NHS health forum

Ovacome Healthforum

IMPRESS cancer diagnostic tool study participant