Have Your Say on the Future of Health Research: Join a Citizens' Jury
- 6 hours ago
- 3 min read
⏰ Applications close Wednesday 4 March 2026
Health researchers are exploring whether genomic data — information from our DNA — could in future be used securely to improve research into conditions such as cancer and rare diseases. Before anything changes, decision-makers want to hear what the public thinks. Members of the public are invited to join a one-day Citizens' Jury taking place on Wednesday 11 March 2026 in Leicester.
What is a Citizens' Jury?
A Citizens' Jury is a way for ordinary people to have a genuine say in important decisions. Participants hear balanced, easy-to-understand information on a topic, ask questions of experts, and then discuss the issues together in small groups led by trained facilitators. The aim is not to reach a single answer but to capture a range of views that can inform policy.
On the day, you will be invited to talk about:
how you feel about DNA (genomic) data being used for research
what would make this feel safe and trustworthy
what worries people might have
what decision-makers should consider before any changes are made
It is important to note that genomic data is not currently being used in the Secure Data Environment. This Citizens' Jury is about listening to the public before any future decisions are considered.
Who is organising it?
The Citizens' Jury is being organised by the Eastern England Secure Data Environment (SDE), in partnership with NHS organisations and public contributors. The Eastern England SDE is a highly secure digital platform, led by Cambridge University Hospitals, that allows approved researchers to access depersonalised health data for research. It includes strong privacy protections, controlled access and independent oversight.
Who can take part?
Invitations are open to people from a wide range of backgrounds, including:
people affected by cancer or rare disease (patients, carers, family members)
anyone with an interest in genetics, health or medical research
To be eligible you must:
be aged 18 or over
live in the East Midlands or East of England
be willing to share your views and listen to others
No special knowledge is needed — just your experiences, values and opinions.
Practical details
Date: Wednesday 11 March 2026
Time: 10am – 4pm
Venue: Voluntary Action Leicestershire, 9 Newarke Street, Leicester LE1 5SN
Thank-you payment: £200 for attending in person. A payment is also available for participants who can only join online.
Commitment: One full day, plus a short amount of preparation time. You will not be asked to share any personal, medical or genetic information.
The organisers can offer support for access needs, help with travel or digital access where possible, and clear information before the event. Taking part is voluntary — you can choose how much you contribute and can withdraw at any time.
How your views will make a difference
What you share will be summarised and reported clearly, used to help guide future policies, governance and safeguards, and shared with the people involved in decisions about genomic data research. Your voice will directly help shape how this work develops.
How to apply
Applications close Wednesday 4 March 2026. To express interest or find out more, please complete the form: https://bit.ly/3ZyRSeh
If selected, you will be contacted with full details.
Why this matters for the Lynch syndrome community
Lynch syndrome is identified through genetic testing, and many in our community have first-hand experience of how genomic information is used in NHS care. This Citizens' Jury is a rare opportunity to influence how genomic data might be used in research — including research into the hereditary cancers that affect our community. If you live in the East Midlands or East of England, we would encourage you to consider taking part.
More opportunities to get involved
Interested in finding out more about other opportunities:
Join the East Genomics Patient and Public Voice Panel — help shape genomic services across the East Midlands and East of England. A few hours a month, expenses paid.
Help shape a new Genomics Health Hub for communities — a short online survey to help design an accessible genomics information website. No prior knowledge needed.
