We are collaborating with Genomics England in delivering the ‘Generation Study’, formerly known as the Newborn Genomes Programme.
This project will evaluate the potential of identifying actionable childhood-onset rare genetic conditions following birth, by sequencing and analysing 100,000 babies’ genomes.
This could contribute to improved outcomes and quality of life for babies and families.
Aims of the Generation Study
The Generation Study has three main aims:
- To evaluate the utility and feasibility of screening newborns for several childhood onset rare genetic conditions using genomic technologies.
- To understand how genomic data could improve knowledge and treatments.
- To explore potential risks and benefits of storing an individual’s genome over their lifetime.
Supporting Genomics England
This is a national study being led by Genomics England, a company owned by the UK Government Department of Health and Social Care, and who are partnering with the NHS to deliver its aims and objectives.
The Health Research Authority have approved the study, which investigates the genomes of new born babies, to see if genetic conditions can be identified, and treated early.
More information is avaialble on their website, including:
- Overview
- How we work
- Engagement
- Ethics
- Choosing conditions
- Baby and Mum Samples Study
- Conditions we test for
A full list of NHS Trust pilot sites will be released shortly.
People from all backgrounds are welcome to join the study. Black, Asian, and minority ethnic communities are under-represented in this kind of research, so if you are a member of these communities, then taking part could make the study more diverse, and help to improve genetic testing for everyone, in the future.
https://www.genomicsengland.co.uk/initiatives/newborns
Progress to date
October 2023
- Genomics England announced an initial list of 223 individual conditions to be included in the Generation Study.
- A Frequently-asked questions (FAQ) document is available to address frequently asked questions from healthcare professionals about the Generation Study, which will be updated regularly with new queries being included.
December 2023
Recording of an NHS North West Genomic Medicine Service Alliance Generation Study workshop, delivered by Genomics England. Available to view below.
January, February and March 2024
Face to face engagement by Gill Moss, Nurse Lead for the Alliance, with key professional stakeholder groups across Manchester University Foundation NHS Trust.