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.
The consent journey
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
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
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.