Patients who are being tested by the Genomic Medicine Service using Whole Genome Sequencing (WGS) can choose to contribute to the National Genomic Research Library (NGRL).
The NGRL is a secure national database managed by Genomics England, a company set up and owned by the UK Department of Health and Social Care. It allows approved researchers to access data and samples to study conditions and look for new treatments that might help your patients and others now or in the future.
NGRL resources to support discussion with patients
NGRL forms
Record of discussion form
The WGS Record of Discussion (opens in a new tab) form should be used to document your patient's decision regarding the NGRL.
If the patient is a child or unable to provide their consent, additional forms may be required, as shown below.
Non-urgent advice: Individuals aged 16+ years with capacity
- Clinical Test
-
RoD signed by individual (or by clinician on behalf of the patient)
- NGRL*
-
No additional forms
*Research choice captured within RoD; additional form to note choice about NGRL if not made at time of clinical test discussion (OPT form)
Non-urgent advice: Children (less than 16 years)
- Clinical Test
-
RoD signed by parent/guardian (or by clinician on behalf of the patient)
- NGRL*
-
OPTIONAL Assent form signed by child
*Research choice captured within RoD; additional form to note choice about NGRL if not made at time of clinical test discussion (OPT form)
Young assent form
Patients between 6 and 15 years of age should complete the young persons' assent form (opens in a new tab) to show they have been informed about their involvement in the National Genomic Research Library (NGRL).
Non-urgent advice: Patient representative/consultee (for adults without capacity)
- Clinical test
-
RoD signed by person acting in best interests of patient (or by clinician on behalf of the patient)
- NGRL*
-
MANDATORY Consultee form signed by consultee
*Research choice captured within RoD; additional form to note choice about NGRL if not made at time of clinical test discussion (OPT form)
Consultee declaration form
If the person completing the WGS Record of Discussion form is a consultee (relative, friend or advocate on behalf of an adult who lacks capacity), a consultee declaration form (opens in a new tab) is also required to enable the patient to participate in the NGRL.
Non-urgent advice: Deceased
- Clinical test
-
RoD signed by appropriate relative (or by clinician on behalf of the patient)
- NGRL*
-
No additional forms
*Research choice captured within RoD; additional form to note choice about NGRL if not made at time of clinical test discussion (OPT form)
Withdrawal from National Genomic Research Library form
A patient may choose to withdraw from the NGRL at any time by completing the withdrawal form (opens in a new tab) and does not have to give a reason.