How it works

As part of your clinical care with the NHS Genomic Medicine Service, you may be offered whole genome sequencing. Your clinician may also ask you whether you would like to add your genome sequence and health data to the National Genomic Research Library (NGRL). This is helping patients across the NHS get more answers to their health questions through research.

It's your choice. If you consent, your data is de-identified and added to the NGRL – our secure, national database of genomic and health data.

Approved researchers and clinicians can then compare your de-identified samples and data with thousands of other people. The more people that take part, the more likely you are to get an accurate diagnosis.

Download participant information sheet

The consent journey

1
You and your clinician may decide together that whole genome sequencing might be helpful as part of your care
2
DNA is extracted from a blood sample you give, and then sequenced
3
Your genome (DNA) data is stored and analysed
4
Your clinical team will get the results and discuss them with you
5
If you consent to further research, your information will be de-identified and aggregated with thousands of other participants' data
6
Researchers will study the data to gain biological insights, and develop diagnostics and treatments to improve NHS patients' lives

It's your choice

It’s up to you whether or not you want to contribute your data to the National Genomic Research Library. If you say ‘no’, you will still get your genomic test and it will not change or affect the care you receive from the NHS.

Possible benefits of consenting to include your data in the National Genomic Research Library

Get answers

For you or others now or in the future that could lead to a diagnosis, access to a different treatment, or an opportunity to participate in clinical trials

Help others with similar conditions

Insights from your data may be able to provide answers for people with a similar condition and even those with many other sorts of conditions

Be part of transforming healthcare

By participating, you'll be part of a new national approach working with the NHS to bring together health data and genomic data for better patient care

The impact of genomic research – Jessica's story

When Jessica was just 4 years old, she was diagnosed with a rare condition. After receiving her sample, and after filtering the results against our curated knowledge base, we were able to find the one causal variant out of the 6.4 million we originally found. A diagnosis made it possible to recommend a special, personalised treatment that helps reduce Jessica's symptoms.