The Participant Panel
The Participant Panel is a key advisory group for Genomics England, working to ensure that the voices of patients, their families, and their experiences inform our work.
Patient supporting patients and genomic research
The Participant Panel is made up of a diverse group of people whose data is held in the National Genomic Research Library. Members come from different walks of life and bring their life experiences of rare disease or cancer.
The Panel advises the Genomics England Board and actively engages in decision-making across other committees and boards, playing a vital role in keeping participants’ interests at the heart of everything Genomics England does.
To bring research participants' lived experience and perspectives into decisions about participant data, services, and healthcare
Data collection and access
Overseeing who will have access to the information collected from participants, how that data is stored, and for what purpose it is used.
Read our language guide
Developed by the Participant Panel, this guide recommends how to talk about the people whose data is curated by Genomics England.
Why I joined the Participant Panel
When I joined the Participant Panel a year after my cancer diagnosis, I wasn't quite sure what to expect. However, knowing the significant impact the Panel had already made on shaping Genomics England’s decisions, I was eager to contribute. Over time, I’ve learnt so much from my fellow Panel members, each of whom brings unique perspectives. It’s an honour and privilege to work together to amplify the voices of participants, patients and their loved ones, doing our utmost to make a difference for people like us.
Helen White
Vice-Chair for Cancer
What truly sets the Participant Panel apart is being woven into the very fabric of Genomics England. We're privileged to have direct access to key decision-makers and scientists, and we're actively consulted on the latest pioneering research and developments. This allows us to directly shape the future of genomics and community engagement.
This isn't merely an advisory role; it's a trusted partnership. We're dedicated to making a tangible impact on the lives of those affected by rare conditions, ensuring that the patient voice remains at the heart of everything Genomics England does.
Adam Clatworthy
Vice-Chair for Rare Conditions
Contact the Panel
Please email us – including 'Participant Panel' in your subject line – if you are interested in joining the Participant Panel or have any questions about its work.
If you're expressing interest in joining the Panel, please outline why you are interested in this role, and include your name and contact details.
Please note: applicants must have direct experience of consenting to take part in genomics research, either as a patient or carer of someone offered whole genome sequencing via the NHS Genomic Medicine Service, the GenOMICC study, or as a participant in the 100,000 Genomes Project.
