NHS Genomic Medicine Service:

Research Information

As a patient of the NHS Genomic Medicine Service, you will be asked if you want to donate genome sequence and health data, and/or your sample (blood/saliva/tissue, etc.), for research.

If you agree, your samples will be stored securely and your data will be added to the National Genomic Research Library. This is a secure national database of de-identified genomic and health data managed by Genomics England. NHS England, on behalf of the hospitals (Trusts) that provided your genomic test, will allow Genomics England to access your identified data to link you to the National Genomic Research Library.

Approved researchers can use the samples and data to study diseases and look for new treatments. Their research might help you and others now or in the future.

What is the National Genomic Research Library?

The National Genomic Research Library is a comprehensive resource that allows researchers to access samples, genomic data, and other associated health data.

The National Genomic Research Library is a partnership between NHS England and Genomics England. The offer to take part in research is an integral part of your clinical care.

Genomics England is a company set up and owned by the Department of Health and Social Care. Additional information about Genomics England is available in our privacy policy. Originally tasked with sequencing 100,000 genomes from NHS patients with rare diseases or cancer, Genomics England has now helped to establish the Genomic Medicine Service (GMS) for the NHS in England.

Your individual information is important for your own health but researchers who use the National Genomic Research Library can learn more about everyone’s health by looking for patterns in the data of thousands of patients.

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.

As part of your care, or care of your relative, you have been offered a type of genomic testing through the NHS Genomic Medicine Service which involves whole genome sequencing. This means every letter of the 3 billion letters in your genome will be ‘read’ to create your unique genetic sequence. As well as being used for your clinical care, the data from your whole genome sequence is also useful for research. Below you will find answers to many questions that might help you to decide whether to donate your data.

Information related to your clinical care can be found here.

  • Involvement may provide an opportunity for you to get answers which could lead to a diagnosis, access to a different treatment, or an opportunity to participate in clinical trials
  • Involvement may help people with similar conditions to you as well as helping people with a variety of other conditions
  • It could mean getting answers for you or others now or in the future
  • You will be part of a new national approach working with the NHS to bring together health data to help patients get better care.
Need to know

Getting the most accurate diagnosis for you involves comparing your data to that of thousands of other people. The more people that donate their data, the more likely you are to get an accurate diagnosis. Important information discovered from this research is used by the NHS to get more accurate genomic testing for everyone.

We hope these pages will help you to understand why agreeing to donate your samples, and health and genomic data is so important for you, your family, and for future generations. The more people take part, the more likely it is that we will all have improved health.