What we do with samples
To study someone’s genome, we take a DNA sample. It usually comes from a few drops of blood. After an NHS practitioner collects the blood sample, all personal details are removed, and it is processed and stored securely for future research.
Collecting the sample
Soon after your baby is born, an NHS practitioner will collect a small amount of blood from the umbilical cord, or in some cases, from a small heel prick.
Removing personal details
Before your baby’s sample leaves the hospital, the hospital team registers the sample with Genomics England. They do this using a unique code number. Then they remove all personal information about you and your baby from the sample.
Only select individuals at Genomics England can connect this unique code back to your baby. They do this so they can send you your baby’s results. They also might contact you with future research opportunities related to your baby’s sample.
Delivering the sample safely
The sample is taken to a laboratory by specialised medical couriers. They ensure the samples are handled properly and transported safely. Blood sample couriers must meet strict regulations.
Processing the sample
The laboratories that process and test the sample are run by external companies. They are commissioned by Genomics England. They cannot access your baby’s personal details.
At the lab, the blood sample is divided into smaller amounts. A portion of the blood will have the DNA extracted for the Generation Study test. A digital version of the DNA is shared with Genomics England using a secure system. They use the digital file to look for changes in genes that are known to cause the 200+ conditions that we test for.
If something goes wrong with the test, we can try again using the leftover blood. Other parts of the remaining blood may also have cells extracted to use for future approved research.
By processing the blood in these ways before it is frozen, it makes it more stable for longer-term storage. Whole blood – or blood that hasn’t had the parts separated – breaks down quickly, even when frozen.
Freezing and securely storing the sample
The whole blood, DNA, and blood cells are then frozen and stored securely. They are still marked only with a unique code and do not include any personal details about you or your child, like names or NHS numbers.
Only select individuals at Genomics England can access information about you and your baby’s identity.
Preparing for future research
In the future, approved researchers may use the samples to do research relating to genes and health.
You and your baby’s identity will not be visible to approved researchers.
Your baby’s sample, along with thousands of other people’s samples that are stored in the National Genomic Research Library, may be used in the future to:
- Improve how we diagnose conditions by identifying new genetic markers.
Approved researchers could look closely at genes that may increase or reduce the risk of childhood conditions. This could help improve diagnosis and future care for children with rare or serious conditions.
- Better understand how conditions respond to treatment.
In some cases, blood cells may be studied in the lab to see how they behave, helping researchers understand how conditions develop and how treatments might work.
- Examine how our immune systems develop to guide future tests and treatments.
The blood cells may be studied to understand how a baby’s immune system develops in early life. This could include looking at how differences between children might influence the risk of infections, allergies, autoimmune, and other childhood conditions.
This type of research is highly regulated and will need to meet strict ethical and legal standards in order to be approved.
Human cloning is illegal and will never be part of the Generation Study.
We will never sell your sample or data to anyone.
How your data is used
Learn more about what digital data is collected, stored, and used for research.
Withdrawing or unsubscribing from the study
If at any time you want to withdraw from the study, you can. You do not have to tell us why.
If you withdraw, all remaining blood samples will be destroyed.
If you unsubscribe, we will stop contacting you, but your sample will still be able to be used for research.