The Generation Study

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The study wants to learn if looking at the DNA of newborns can help us find and treat genetic conditions
earlier.

By taking part, you could find out early about a possible genetic condition in your baby. Joining the study could also help future generations of children with genetic conditions get a healthier start to life.

This study tests for 200+ rare genetic conditions. These conditions all have different types of symptoms. However, they all can cause someone to get sicker than the average child.

The study is run by Genomics England, a company owned by the UK Government Department of Health and Social Care. Their research looks at new ways genetics can affect our health. They are working with the NHS to carry out this study.

How it works

  • The study team will sign you up in person or over the phone.
  • An NHS practitioner will collect a blood sample shortly after birth and it should not hurt.
  • We’ll contact you by phone or email within a few months with the results.
  • Data is safely stored and used for research.
  • Genomics England will store your baby’s samples and heath data, a digital file of their DNA, and your antenatal data.
  • Approved researchers can study this data to learn more about genes and health.
  • We’ll keep you updated about the study for the next 16 years.
  • Any suspected conditions can be treated in the NHS.

The Generation Study – what is it and how does it work? – YouTube

Sign up when you’re pregnant, and the test will happen shortly after birth. Taking part is free and optional (and you can always withdraw).

Visit the website for more information and to register your interest (or talk to your study team).