Who has access to the data?
Clinicians and healthcare staff
Doctors, nurses and other healthcare professionals in NHS Genomic Medicine Centres have access to information about the patients they are caring for.
This is to enable clinical staff to see any results or findings from whole genome sequencing for patients in their care.
Researchers need to apply to access the de-identified genomic and health data in the data centre. Researchers first have their identities checked. Then, their application is reviewed by our independent Access Review Committee.
If their application is approved, they are given secure access to the data centre through a virtual computer. All their activity is monitored and recorded.
Criteria for approving research requests
A request to access the dataset goes through several steps before it may be approved. There are many different criteria an application must meet. An application must demonstrate
- Scientific merit and validity
- Relevant information governance training or practices are in place
- Individuals have relevant skills to access the data correctly
- Research is in line with our informed consent policy, procedures and literature approved by the Research Ethics Committee (REC).
Current people and projects approved for access
See the list of current research projects approved for access.
Several companies and organisations have access to different parts of the secure datacentre, or data pipelines. This is because they are providing the data itself, IT support, computing infrastructure, data storage, genome analysis, or other technical services. Each company only has access to the part of the datacentre they are working on or supporting. It is feasible that someone working in the datacentre could see de-identified participant data. All individuals working in the datacentre undergo Information Governance training and sign confidentiality agreements. In addition, Genomics England holds strict contracts with each company with penalties if terms are breached. The Access Review Committee approves all these companies.