Public Standing Group: Newborn Genomes Programme

This procurement focuses on the facilitation and management of a group of members of the public drawn from previous dialogues to deliberate on: The implications of storing a baby's genome over their lifetime Other issues, as they arise, in the delivery of the Generation Study - particularly those which would benefit from public deliberation The group will need to run for a period of one year and examples of the issues that might be deliberated on include: - Expectations of genomics over a babies' lifetime: exploring acceptable uses - Involving young people as they grow up: navigating consent and assent - Disclosing genomic findings over a person's lifetime: how, when, why, who? - Relationships between genomic and wider health data - Health records and the incorporation of genomic data - Clinical access to genomic data: exploring the boundaries - Genomic futures: newborn screening implications for the future of prenatal testing - Reanalysing genomic data: exploring parameters