Participants who have taken part in the 100,000 Genomes Project have been invited to join a new national participant panel
Genomics England is looking for people who have already taken part in the 100,000 Genomes Project to join their national participant panel. It is hoped that the panel will help shape the future of the project to ensure its longevity.
The role of the panel is to ensure that the interests of participants remain at the heart of the project. Genomics England’s key aims are:
- To improve participant’s experiences.
- To respond appropriately to feedback.
- To oversee who has access to participant data.
Who can be a member?
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. Participants from both the cancer and rare disease arms of the project are encouraged to come forward. Members of the panel should be able to put themselves into other people’s shoes, and empathize with other participants, as well as drawing from 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 the meetings in person can join by telephone or Skype. There are likely to be documents to read or consider before any meetings and there may also be follow up work. Documents and paperwork will usually be sent by email.
It is hoped that members of the panel will contribute to decisions regarding its role and responsibilities. All members will be expected to contribute ideas and experiences.
Some panel members will also sit on other committees within the organisation. These include:
- The Access Review Committee, which oversees decisions regarding who has access to participant data.
- The GeCIP Board, which oversees the research wing of the project.
Panel members who also sit on these committees will need to attend extra meetings.
For more details on the role or to join the panel please visit: http://www.genomicsengland.co.uk/participant-panel/