Prioritising Participation (360G-Wellcome-203161_Z_16_Z)

Genomics England is creating a new genomics medicine service for the NHS and sequencing 100,000 genomes from people with rare disease and cancer. To maximise the benefits, and minimise the harms, of rountinising genome sequencing in the NHS, the ethical and social issues need to be carefully addressed. In addition, patients’ voices need to be heard from the start of this effort. The aim of 'Prioritising Participation' is to identify and prioritise critical issues for research around genome sequencing. We will conduct a one-day workshop, led by the Patient Involvement and Experience GeCIP (Genomics England Clinical Implementation Partnership), to bring together patient advocates, representatives of potential participants in the 100,000 Genomes Project, policymakers, clinicians, and researchers to explore the key ethical and social questions around genome sequencing, in a collaborative and egalitarian setting. Key goals are to: \- consult representatives of groups who are potential participants in the 100,000 Genomes Project \- identify and prioritise, by consensus, key ethical and social issues for patients and families in the 100,000 Genomes Project \- document and disseminate the research priorities suggested by the findings \- increase awareness of the work of the Patient Involvement and Experience GeCIP group \- build partnerships with patient advocates/organisations and other stakeholders