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
I’ve been a member of the Participant Panel since it started in April 2016, and was immediately struck by how much access the Panel members had to the decision-makers at the heart of the Project. We can invite the most senior figures from across the Project to come and discuss their work with us, and it is always an honour to engage with them and their colleagues on behalf of the other participants. We have sometimes challenged them to do more, and they have usually responded well.
Jillian Hastings Ward
Chair, Participant Panel
I’m very pleased to say that since day one, the Panel’s input is valued at every level of Genomics England. The Panel is trusted and respected, and works hard to ensure patient interests are represented. We ensure our data is protected and used ethically by a growing number of national and international researchers looking to carry out pioneering research and progress our understanding of rare disease and cancer.
Rebecca Middleton
Vice-Chair, Participant Panel
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.
