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How your data is used

None of our work would be possible without the consent and support of patients and participants – they are at the heart of everything that we do. By enabling scientists and clinicians in their research, a patient’s data goes from being an isolated dot to a key part of the picture.

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Your data in the National Genomic Research Library

The data we collect is stored in the National Genomic Research Library, a platform built by us and NHS England that allows approved researchers to access samples, genomic data, and other associated health data via a secure Research Environment.

Researchers who use the Research Environment can learn more about everyone’s health by looking for patterns in the de-identified data of thousands of participants.

Being able to compare all patient data in one place provides researchers with an opportunity to better understand diseases, develop new treatments and can lead to new diagnoses.

All data in the National Genomic Research Library has been de-identified and cannot be extracted by researchers.

What kind of data is stored in the National Genomic Research Library?

Types of de-identified data that are collected:

  • Your medical test results

  • Electronic copies of your health records from the NHS, your GP and other organisations (such as NHS Digital and Public Health England)

  • Information about any illnesses or stays in hospital – including your primary diagnosis and any historic diagnoses going back as far as medical records allow

  • Copies of hospital or clinic records, medical notes, social care, and local or national disease registries

  • Relevant imaging data from your NHS records, such as MRI scans, X-rays or pathology images

A lifetime resource

Your records will continue to be updated throughout your lifetime, for as long as you give us permission to. This lifelong health data may allow development of better treatments or diagnostics for others.

Why do we gather clinical data as well as your genome sequence?

To take a deeper approach to genomic research, we need as much detail as possible about a participant’s medical condition and symptoms.

Even small differences in symptoms between individuals might be crucial in understanding what changes in a genome mean, and helping decide the best treatments.

Only by understanding your detailed clinical data are we able to understand how patterns in your genome affect your diagnosis.

What will the data be used for?

Finding treatments

Helping to find new treatments and possibly cures for a wide range of health conditions.

Improving analysis

Researchers might use the data to try and find new, faster ways to analyse large amounts of data.

Sharing knowledge

Researchers may share their findings with other scientists and doctors through publications or meetings to help research advance as quickly as possible.

Developing drug and diagnostic tests

New drugs and diagnostic tests may be developed by the NHS, universities and companies across the world.

Suggesting clinical trials or relevant research

Researchers will be able to find opportunities for you, and others like you, to take part in relevant research projects or clinical trials.

Keeping your data safe

De-identifying data in the National Genomic Research Library

Maintaining your data security and protecting your privacy is our top priority

To maintain your privacy, information that could identify you – like name, date of birth, and all other personal details – is removed from your health records and genomic data.

This process of de-identifying data ensures that researchers have no way of identifying individual participants while using the Research Environment.

Keeping your data safe

How is data stored and secured?

Genome data is enormous, and we use a cloud service from Amazon Web Services (AWS) – based in the UK – to provide a secure cloud computing and storage infrastructure. All patient data is held in secure facilities based in the UK.

All of the data from the National Genomic Research Library stays within the secure, monitored Research Environment where it can be analysed by researchers.

In this way, Genomics England considers the National Genomic Research Library to be a reading library – not a lending library.

How we protect your data:

  • Continuously review latest best practice for secure storage
  • Use industry-standard tools and techniques to prevent unauthorised access
  • Regularly undertake security tests
  • Meet all laws and standards for data protection
  • Closely monitor all activity on the secure Research Environment

Who has access to the data?

Anyone with access to the de-identified data in the National Genomic Research Library must be approved by the Access Review Committee and Genomics England.


Approved researchers may work for not-for-profit organisations, such as universities, hospitals, or research charities, and for-profit (commercial) companies such as pharma, biotech or diagnostic companies from around the world who will work with de-identified data to better understand diseases and develop diagnostics and treatments.

Clinicians and healthcare staff

Doctors, nurses and other healthcare professionals in the NHS have access to information about the patients they are caring for.

This is to enable clinical staff to see any results or findings from whole genome sequencing for patients in their care.

Service providers

Approved organisations who provide the data itself, IT support, computing infrastructure, data storage, genome analysis, or other technical services.

Each company only has access to the part of the data centre they are working on or supporting, and all individuals have undergone Information Governance training and signed confidentiality agreements.

The data will never be used for insurance or marketing purposes, nor for speculative searches, such as checks of DNA profiles or other information derived from your sample.

The Department of Health and Social Care has had confirmation from the Home Office and the Association of Chief Police Officers that they will not seek access to Genomics England’s data without presentation of a court order.

For further details of unacceptable uses, please see the list as detailed in the Research Ethics Committee approved Protocol.

Read the protocol


Questions about the National Genomic Research Library?

If you would like to make a data request, please see our data requests page. To contact us about the National Genomic Research Library, please get in touch on 0808 2819 535 or by email using the link below (it will open in your email application).

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