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

Additional information:

Please register on the e-tendering portal (Bravo) on the link provided. Once registered, you can find the opportunity under project title Public Standing Group on Ethics or the project reference "project_868".