The Generation Study, is a research study in which the genomes of 100,000 newborn babies in the UK will be sequenced to detect if they have a rare genetic condition. 

This study is developed and run in partnership with the NHS to understand whether the NHS’ ability to diagnose and treat genetic conditions can be improved through genome sequencing.  

A total of 200 conditions are included in this study. These conditions were chosen because they manifest early, but can also be treated effectively if diagnosed early.  

Of the 200 conditions, 1/2 are inherited metabolic disorders.

We’ve launched a survey to gather people’s thoughts and experience on The Generation Study. We estimate that it will take you approximately 10 minutes to complete.

Click the button below to fill out the survey:

• For more information about the Generation Study, visit: https://www.genomicsengland.co.uk/initiatives/newborns  
• Looking for support or want to share your experience of The Generation Study? Please fill in our contact form or ring  0800 652 3181.

A genome is like a complete set of instructions for building and running a living organism. It is found in almost every cell and is passed down from parents to children. 

Genome sequencing means a machine reads out or “decodes” the entire instruction manual for building and running a living organism. You can think of it as a detailed recipe book that tells you everything you need to know about building and running a living organism.