Would you like to help shape the future of the 100,000 Genomes Project?

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People who have taken part in the 100,000 Genomes Project, or their carers, are being sought to join the Participant Panel.

The 100,000 Genomes Project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer. The ultimate aim is to bring personalised medicine to the NHS. You can read more about the project here: genomicsengland.co.uk/the-100000-genomes-project

Genomics England is looking for people to join the national Participant Panel. The role of the Panel is to ensure that the interests of participants are always at the centre of the Project. It will have a key role in overseeing those who should have access to participant data, in constantly improving the experience and services available to participants and in soliciting and responding to feedback from the 70,000 participants expected to take part in the Project.

The Panel is open to anyone who has taken part in the 100,000 Genomes Project, or their carers, and will meet in person twice a year in London. This is likely to be a ½ day meeting and, ideally, all Panel members will attend. 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 after a meeting. Documents and paperwork will usually be sent by email.

We hope that Panel members will bring their own experience of taking part in the 100,000 Genomes Project to the Panel. However we are looking for people who can also see things from another participant’s point of view. Panel members must be able to be flexible in their approach, as things in the Project can change quickly, but do not need to have a detailed knowledge of science, genetics or healthcare.

The panel acts as an advisory committee to the Genomics England Board and members may be invited to sit on other committees within Genomics England, for example the Access Review Committee.

If you are interested, please complete the form on the Genomics England website – genomicsengland.co.uk/participant-panel or e-mail opportunities@genomicsengland.co.uk.

Reimbursement

Panel members will be paid for their time. The payment is £150 for a meeting and £50 for teleconference. This payment is the same no matter how long the meeting, and also covers any preparation or follow up work. In addition, reasonable expenses will be covered.

Date required

Ongoing

Contact

If you have any questions about the panel and the role of members, please email opportunities@genomicsengland.co.uk

How to apply

Please email opportunities@genomicsengland.co.uk 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.