For clinicians
Information and resources for clinicians engaging with whole genome sequencing and the NHS Genomic Medicine Service.
Patient choice: whole genome sequencing and taking part in research
It's important that patients can make an informed decision about having whole genome sequencing (WGS) in the NHS Genomic Medicine Service (GMS), as well as make a clear and distinct decision about being part of the National Genomic Research Library (NGRL).
These choices are outlined on the Record of Discussion form.
This may involve one or more discussions between a patient and their clinical team to understand the implications of having WGS and taking part in research. Patients can say ‘no’ to the NGRL and still have WGS without this changing or affecting the care they receive from the NHS.
This page provides materials and links to assist clinicians with facilitating patient choice. Specific processes in your region may have been adapted for local needs, so please check with your local NHS Genomic Laboratory Hub (GLH).
Health Education England's Genomics Education Programme offers a series of online courses and competency frameworks about facilitating genomic testing.
Materials for patients
What is the National Genomics Research Library (NGRL)?
The NGRL is a comprehensive database that houses de-identified genomic and health data from patients and family members. It is built and run by Genomics England and NHS England. This resource supports thousands of research projects that can help:
- identify diagnoses
- improve our understanding of health and disease
- accelerate the development of new treatments, diagnostics, and tools for discovery
Patient participation in the NGRL is optional. Individuals can decide not to take part, defer their decision, or withdraw at any time.
Participant data in the NGRL is stored safely and securely and has been de-identified. All names and identifying information has been removed and replaced with an individual reference number. This resource can be accessed only by approved researchers (infographic on access).
National Genomic Research Library (NGRL) consent forms
Record of discussion form (covers NGRL and WGS)Materials for clinicians discussing patient choice and the NGRL
Guide to discussing WGS with patients with rare diseases
Health Education England Open the guide (.pdf)
