Research Institutions

How can we make genome sequencing of newborns ethical and fair?

Newborn Genomes Programme
Institution:
Method:
Partners:
Genomics England
Duration:
November 2021 to June 2022

Genomics England is co-designing and running an ethics-approved research pilot for the Newborn Genomes Programme embedded in the NHS. The pilot will explore the benefits, challenges and practicalities of sequencing the genomes of newborn babies - its aims are:

  • To identify rare diseases in newborns
  • To enable research
  • To create a lifetime resource

Involve has worked with the Genomics England’s Working Group to reach consensus on a draft set of principles that can guide what conditions will be looked for in the programme. 

As this first phase has come to an end, Involve will continue to work with Genomics England on their second phase of the project which will have a wider engagement process with a variety of stakeholders. We will hold workshops with members of the public, patients and healthcare professionals to explore their views and experiences, and discuss how the principles would work in practice.

Members of the public will also be able to give their views through an online platform that can be found here. This page will continue to be updated as the project progresses.

The report from the Working Group’s deliberations will be available in the coming weeks.