The National Genomic Research Library (NGRL) is a comprehensive database, linked to the NHS Genomic Medicine Service (GMS), that enables approved researchers to access de-identified genomic data, health data and samples.
An offer to take part in the NGRL will initially only apply to patients with rare diseases and cancers who are eligible for whole genome sequencing (WGS) in the GMS. To support healthcare professionals having these discussions with patients, we asked members of the Genomics England Participant Panel for their feedback as individuals who have been offered genomic testing that involved associated research.
This one-page PDF guide summarises the key points that healthcare professionals could consider when discussing the NGRL with their patients.
For more details about the NGRL, see our in-depth information for clinicians.
Background
NHS England is implementing the GMS to provide consistent access to high-quality and cutting-edge genomic testing across the NHS in England. Available tests will be outlined in National Genomic Test Directory, including WGS for certain rare disease indications and cancers.
WGS in the GMS will involve a ‘patient choice’ consent model, which covers both the clinical implications of a test, as well as an offer to participate in the NGRL within the clinical pathway. Patients’ choices will be recorded on nationally standardised record of discussion forms.
Please note that the process of requesting WGS may be adapted for local needs, so make sure you have checked with your Genomics Laboratory Hub, which can assist with queries about using the correct forms, submitting patient clinical information and which family members to include in the testing.
