The 100,000 Genomes Project Participant Panel

The Participant Panel sits at the heart of Genomics England and is made up of participants from both the rare disease and cancer parts of the 100,000 Genomes Project, and parents or carers of people involved in this project.

Members of the Panel with the Genomics England and NHS England team.

The role of the Panel is to ensure the interests of participants are always at the centre of the 100,000 Genomes Project. They do this by:

  • Making sure that the experiences of participants are heard.
  • Responding to feedback.
  • Overseeing who should have access to participant data.

Established in 2016, the Panel meets three times a year and invites staff from Genomics England and NHS England to discuss the 100,000 Genomes Project. It provides advice on how the project can continue to ensure that participants’ interests are at the heart of all its key decisions.

The Panel is also actively engaged in key committees of Genomics England. Its members sit on the Access Review Committee, the Ethics Advisory Committee and the GeCIP Board.

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.

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. Participants from both the cancer and rare disease parts of the Project can join.

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 does it involve?

The panel meets three times a year in London. 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.

Some panel members also sit on other committees in Genomics England. Panel members who also sit on these committees will need to attend extra meetings.

Why take part?

The Project is the largest national sequencing project of its kind in the world. It is at the cutting edge of science. This is an opportunity for participants in the 100,000 Genomes Project to shape its future.

The panel will play an vital role in our groundbreaking work. Panel members will help guide this pioneering project and how genomic medicine is used in the NHS in the future.

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 us 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.