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.
The Panel acts as an advisory body to the Genomics England Board, working to ensure that the data collected by the Project is being used in the best interests of the participants and is looked after with respect.
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 advises them 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 decision-making across the committees and boards 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.
In addition, the Panel and its members also listen and respond to feedback from participants in the Project, and make sure their experience is used to inform future service design. For example, the Panel were instrumental in the introduction of the Track My Sample service, which went live in December 2017.
As the NHS establishes a new Genomic Medicine Service in 2018, the Panel will be as busy as ever helping to shape its future by ensuring patient views are at the heart of Genomics England.
The Panel is always keen to hear from active participants in the Project and their carers. If you are interested in joining, see here for further details.