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Genomics 101: What is the National Genomic Research Library?

By Florence Cornish on

In this series, ‘Genomics 101’, we go back to basics and explore some of the most important topics in genomics. In this blog, we explain the National Genomic Research Library, and how it is supporting thousands of research projects.

First things first, what is the National Genomic Research Library?

The National Genomic Research Library, sometimes shortened to ‘the NGRL’, is a secure database that holds de-identified genomic and health data from participants.

All participants are patients or family members of patients, each of whom have consented for their data to be held by Genomics England and used for research.

The database is managed by Genomics England and serves as a resource for thousands of research projects.

Genomic data... what does that mean?

Genomic data is data that has been collected from genome sequencing tests.

These tests let us look at the sequence of someone's DNA to check for any genetic changes that might be affecting their health.

Many participants have had their genome sequenced through a genomic test in the NHS. Others are part of research studies, and have consented to be included in the NGRL as part of participating.

And what about health data?

Health data refers to the health records we collect alongside genomic data, for example blood test results or imaging data from scans.

It also means ongoing health records collected over time, such as hospital treatments, medications and tests.

Why is it de-identified?

When data in the NGRL is de-identified, all information such as name, date of birth, and other personal details are removed.

This means that any researchers who access the data cannot identify individual participants. Researchers are interested in finding new patterns and connections between symptoms and health conditions, not the personal details of particular participants.

Do patients in the NHS have to be part of the NGRL?

No, everyone with data in the NGRL has specifically consented for their data to be there.

Patients in NHS England who receive a whole genome sequencing test, for example for rare conditions or some types of cancer, will be offered the opportunity for their data to be added to the NGRL.

Why do we call it a library?

We think of the NGRL database as a library because it stores large amounts of information, just like a real library.

Where regular libraries have lots of books, the NGRL has lots of information about people’s genes and health.

Though researchers can look at data in the NGRL, they cannot take any of it away with them. Think of the NGRL as a reading library, where people can come in to study the books, but no one can take any of them home.

So, how can researchers access the data?

To access data in the NGRL, researchers must be approved by both Genomics England and the Access Review Committee (ARC).

This committee independently examine and respond to requests from academic and industry researchers who wish to access the data.

Their job is to check that the research aims of the applicants align with those of the NGRL, and that they are in the interest of both the public and participants.

Details of all approved projects are publicly available on our research registry.

What kind of research does the NGRL support?

Researchers work with data in the NGRL to better understand how our genes affect our health.

The combination of genomic and health data in the NGRL lets researchers look for patterns or potential connections between genes and disease.

For example, they could gain clues about the potential causes for rare genetic conditions, or insights into the best ways to treat different types of cancer.

Do you have any examples?

Sure! In January 2024, a study analysing genomic and health data from over 13,000 people with cancer was published in Nature Medicine.

This landmark study provides an overview of the number of cancer-causing genes that were actionable – meaning they may influence how a patient’s cancer can be managed or treated.

One of the findings researchers made was that over 90% of brain cancer cases and over 50% of colon cancer cases in the study were caused by actionable genes. This means that patients with these cancer types may receive personalised treatment according to the specific genetic cause of their cancer.

Read more about this research in a previous blog, or see other great examples of research that uses data from the NGRL.

If researchers can’t take data out, how does research get published?

Good question! Researchers cannot take data out of the NGRL, however, they can request to take a summary of their data analysis out of the Research Environment.

This is what lets them publish new findings and get research out into the world.

To do this, researchers must apply to the ‘Airlock’ committee, which checks all outputs to make sure that the summaries are safe.

Find out more about Airlock here.

What if a researcher finds something that affects a patient?

A big part of our mission at Genomics England is to allow researchers to feed their findings back into the NHS, and for it to potentially have an impact on someone’s care and treatment.

This means that if a researcher finds something that could lead to a diagnosis for a patient, we at Genomics England act as the facilitators by re-identifying that participant, going back to the NHS and the patient’s clinician to let them know.

It is then the clinician’s responsibility to provide the diagnosis if they think it is right for their patient.

How do you keep the data safe?

There are lots of things we do at Genomics England to keep data in the NGRL safe.

Approved researchers gain access to the data via a secure virtual Research Environment.

This environment meets all the laws and standards for data protection, and we use industry-standard tools and techniques to prevent unauthorised access.

We also do regular security tests on the Research Environment, and continuously review latest best practice for secure data storage.

What if participants want to remove their data?

Anyone who has data in the NGRL can withdraw it at any time without having to give a reason.

This means that no further data will be collected, and that all existing samples (including DNA samples) will be destroyed, meaning they will no longer be available for research.

However, data cannot be withdrawn from research that has already been done with the NGRL.

Find more information about withdrawing from the NGRL.

And finally...

Prefer to listen? Check out our Genomics 101 podcast: What is the National Genomic Research Library?

Or, see other Genomics 101 blogs to read more about other topics in genomics.

If you found this blog helpful, leave a comment below about other topics you would like to see in the series.

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