It is your decision whether or not you want to take part in the National Genomic Research Library.
If you say ‘no’, you will still get your genetic test and it will not affect your care by the NHS.
You will need to sign a record of discussion form; the form has two simple questions and you need to agree to all of them.
Genomics England will then add your clinical test and health care data to the data of hundreds of thousands of other patients in the National Genomic Research Library.
Before giving researchers access, Genomics England ‘de-identifies’ your data. This means removing anything that might identify you personally (like your name, date of birth, NHS number and other personal details).
Genomics England makes sure that anyone who wants to use your data is fully approved. Every single study that researchers want to do has to be approved first by a Genomics England panel that includes patients whose data is also in the National Genomic Research Library.
Saying ‘yes’ to the National Genomic Research Library does not affect your involvement in any other research projects and you could be offered other research opportunities by your clinical team.
You do not have to decide to take part immediately, you can choose to participate at any point in the future by speaking to your healthcare professional
From time-to-time you may be contacted by your clinical team (or occasionally by Genomics England) to give you more information:
- If anything has been found which might be relevant to your health or that of your family.
- If there is an opportunity to involve you in a specific piece of research, or if you are eligible for a clinical trial.
- You may be contacted for additional research or trials related to your original test, or about different information that researchers are interested in.
- If there is general news about on the National Genomic Research Library.
If an additional or different sample is required for an approved research project, your clinical team or Genomics England might contact you.
The processes for re-contacting you will be managed by Genomics England together with the NHS.
You will never be contacted for marketing purposes.
Unfortunately, it won’t be possible to let you know when your data has been accessed. This is because there are tens of millions of different bits of data in the Library and it isn’t feasible to tell people every time a bit of their data has been used. However, it is possible for you to see what type of research is being done in the National Genomic Research Library here.
We think it is very important that people see what has been achieved thanks to their data donation.
Updates about new research are available on the Genomics England website for you to read and share.
DNA is extracted from your sample and is then sequenced. The sequence is used by the NHS to do the genomic test. The actual DNA sample remains in the NHS.
A digital code representing your sequence is placed in the National Genomic Research Library and this is what researchers are able to use.
Sometimes all of your sample will be used when your DNA is sequenced. Sometimes there will be some material left over. If there is, it will be stored securely and may be used either for your further care or occasionally for research.
Genomics England may access surplus tissue (or other) samples stored in the NHS for research where it does not affect your care.