Joining the Participant Panel
We are looking for people who have taken part in the 100,000 Genomes Project to join our national Participant Panel. The 100,000 Genomes Project is a landmark project in healthcare which has the potential to bring personalised medicine to the NHS. This new panel will help shape it’s future.
The role of the Participant Panel is to ensure the interests of participants are always at the centre of the 100,000 Genomes Project. They will do this by:
- Making sure that the experiences of participants are improved.
- Responding to feedback.
- Overseeing who should have access to participant data.
Who can be a member of the panel?
Anyone who has taken part in the 100,000 Genomes Project can be on the panel. Carers of people who have taken part are also welcome. We would like participants from both the cancer and rare disease parts of the Project.
Members should be able to put themselves into other people’s shoes, and see the point of view of other participants as well as using their own experiences.
What will it involve?
The panel will meet twice a year in London. This is likely to be a ½ day meeting. Those who are unable to join meetings in person can join by telephone or Skype. There are likely to be documents to read or consider before any meetings. There may also be follow up work. Documents and paperwork will usually be sent by email.
We hope the panel will shape their own work and define their own responsibilities. All members will be expected to contribute their ideas and experiences to the panel.
Some panel members will also sit on other committees in Genomics England. These include:
- Access Review Committee, who oversee who has access to the participant data.
- The GeCIP Board, who oversee research in the 100,000 Genomes Project.
Panel members who also sit on these committees will need to attend extra meetings.
The Access Review Committee (ARC) is an independent advisory body for the 100,000 Genomes Project. It examines requests for access to data in the project.
The ARC approves, declines, or amends requests for access to data in the 100,000 Genomes Project. Decisions take into account many factors including the nature of the research and the risk of identifiability. External sources of expertise may be called to help the decision-making process.
The Genomics England Clinical Interpretation Partnership is overseen by the GeCIP Board. This is Chaired by Professor Dame Kay Davies, who also sits on the Board of Genomics England.
The main roles of the GeCIP Board are:
- To oversee and coordinate the clinical interpretation programme.
- To sponsor a twice yearly conference of all active GeCIP members.
- To receive advice from Genomics England Advisory Committees.
- To provide advice to the Genomics England Board.
Are expenses paid?
Panel members will be paid for their time and reasonable expenses will be covered. We will provide support and training for everyone on the panel.
How to apply
Please download the role description for more information.
Please email email@example.com if you are interested in joining the Panel. In your email, please outline why you are interested in this role. Please also include how you are involved in the 100,000 Genomes Project. Finally, please include your name and contact details.
You can contact us on firstname.lastname@example.org if you have any questions.