The Participant Panel
The Participant Panel sits at the heart of Genomics England and is made up of participants from the 100,000 Genomes Project, and parents or carers of people involved in this project. It is expanding to include patients and relatives from the GenOMICC COVID-19 study and NHS patients who give consent for their whole genome sequences and associated health data to be used for research in the Genomics England data bank.
The Panel acts as an advisory body to the Genomics England Board, working to ensure that the health data held by Genomics England is being looked after with respect and used in the best interests of the participants.
Established in 2016, the Panel meets four times a year and invites senior staff from Genomics England and NHS England to discuss what they are doing with our data. It advises them how they can continue to ensure that participants’ interests are at the heart of their key decisions. Panel members are also often asked for their experience of genomic services and advice on future design. Work regularly continues between these Panel meetings.
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.
The Panel currently has vacancies for patients and their relatives involved in the GenOMICC COVID-19 study and for patients (or parents of children) being treated by the NHS Genomic Medicine Service. We are especially keen to hear from men, and from people from Black and other minority ethnic communities. If you would be interested in applying, please email [email protected] with ‘Participant Panel’ as the message title.