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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 both of them.

Genomics England will then add your clinical test and health care data to the data of hundreds of thousands of other people 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.

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.

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 people whose data is also in the National Genomic Research Library.

For more on data usage and protection, visit our how your data is used page.

To find out about participant data requests under the GDPR and the Data Protection Act 2018 and how you can submit a request, visit this page.

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.
• If there is additional research or trials related to your original test, or if researchers need additional information from you to help them.
• 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, you can see what type of research is being done in the National Genomic Research Library.

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 by Genomics England and its approved researchers.

Genomics England may access surplus tissue (or other) samples stored in the NHS for research where it does not affect your care.

Many people ask us this. Your genome sequence is stored as a digital record – so, no, it can’t.

But if you have a sample in a bio-repository, technically this could be done if someone broke through the security of the biobank, managed to locate your sample amongst the millions stored, defrost it without damage, be knowledgeable enough to extract the DNA, get out of the building and get it to the crime scene. This is unlikely especially as the alternative is collecting a few hairs from your hairbrush or clothes and using those.

Your data can help researchers for many years – or for as long as you wish to take part.

If you change your mind and want to withdraw from the National Genomic Research Library, you are free to do so at any time. You don’t need to give a reason. This also applies if you are a parent wanting to withdraw your child, or a consultee wanting to withdraw on behalf of somebody else.

A withdrawal form will be required to record this decision. The form can be requested from your healthcare professional or the withdrawal form can downloaded here.

There are two options to consider when withdrawing from the National Genomic Research Library, partial withdrawal and full withdrawal.

This option is for situations where you would be content for your de-identified data to continue to be used for research, but want no further contact.

Genomics England:

• will no longer contact you about research.
• will continue to make your de-identified information available for research in the National Genomic Research Library.
• will continue to use any data and samples already collected, and any information from your health records in the future.

This option is for situations where you no longer wish for your data to be used for research and want no further contact. An audit record is needed to confirm that you were once part of the National Genomic Research Library and then withdrew. This information includes your first name, surname, date of birth, address and contact details.

Genomics England:

• will not contact you directly.
• will not continue to update and store information from your health and other records.
• will not allow new research access to information that is held about you or use your information for purposes other auditing.
• cannot remove data from research that is underway or has already been done.
• cannot remove all records related to you from our databases, because an audit record is needed to confirm that you were once part of the National Genomic Research Library and then withdrew. This information includes your first name, surname, date of birth, address and contact details.

In cases where someone may not be able to give consent for themselves, such as being under the age of 16 or not having capacity to do so, they will still be able to contribute their genomic data to the National Genomic Research Library through their parent, guardian or consultee.

As a parent or guardian, you will need to decide on behalf of your child if you want them to take part in the National Genomic Research Library. If you don’t want them to, they won’t be included. At least one person with legal parental responsibility needs to complete the ‘record of discussion’ form. Where appropriate, your child can be involved in making the decision to take part by completing a young person’s assent form which will be provided by one of your healthcare team.

Acting as a consultee

A ‘consultee’ is someone who is making a decision for somebody else considered to be unable to decide for themselves.

If you have been asked to be a ‘consultee’, this means you are making a decision for somebody who is considered to be unable to decide for themselves. You should consider their likely views and interests and set aside your own personal views about participating in research.

One of your healthcare team will ask you to sign a consultee declaration form; this document provides more information about the responsibilities of the role.

Deceased relatives

Sometimes, your healthcare team might ask for permission to collect a sample from a relative shortly after their death. This may be to help understand more about your relative’s health conditions, for the benefit of other family members, or other patients with the same condition.

You might be asked to decide if the data from a deceased relative can be included in the National Genomic Research Library.