Keeping your data safe

We will securely store you and your baby’s data and sample for 16 years. Approved healthcare researchers will access it so that they can work on new treatments.

Data we store

  • Your baby’s DNA
  • Your antenatal record
  • Regular updates from your baby’s healthcare record
  • Your contact details

The antenatal and health data are collected from NHS England and other organisations, which are listed in the Genomics England privacy notice.

Where data is stored

We store this information in a secure database called the National Genomic Research Library. This is a library where genetic and health data from thousands of people is accessed for research.

View Genomics England's data page


Who accesses the data

Genomics England

Only select individuals at Genomics England can access data about you and your baby’s identity and contact details. We only share this information with your baby’s GP and NHS specialist team.

We will also review your baby’s health data throughout their childhood. This will help us better understand how the test works. It will also help us determine if it makes sense for this type of test to be more widely available in the future.

Approved healthcare researchers

Your baby’s genetic and healthcare data, and your antenatal data go into the library. Approved healthcare researchers will study data in the library, including your baby's data. 

They could come from hospitals, universities, charities, or healthcare companies like pharmaceutical companies.

You and your baby’s identity will not be visible to them. We’ll never share this data with insurers or marketers.

Why they access data

Researchers access this data to learn more about genes and health, discover new conditions, and create new treatments.

Your baby’s data, along with thousands of other people’s data, may be used to:

  • Help researchers distinguish between harmful and harmless genetic changes.
    This is important for accurately diagnosing and developing treatments for genetic conditions.
 
  • Aid in cancer research.
    By looking at data with and without certain changes, researchers can find new cancer-related genes and develop therapies that benefit many cancer patients. 
  • Help improve the accuracy of genomic screening tests.
    By helping us better identify people who are at-risk sooner, treatments can be started earlier which may lead to better outcomes for those with conditions. 

Keep in mind

One type of approved researcher who can access data is private pharmaceutical companies. Here is an example to consider.

A private pharmaceutical company is making a new drug for children with a rare disease.

You hear that they used data from the Generation Study during their research. You gave consent for your baby to join the study five years ago, and so this might include your baby’s digital data and their stored blood sample.

They could not see any details that could identify your baby. And like any researcher, they followed a strict approval process.

This kind of research can help advance medicine — but some people might be uncomfortable with it. 


We recommend considering this example carefully before you join the study.