Data Access and Use

Participant privacy and confidentiality is vital in the 100,000 Genomes Project.

A key feature of the Project is that an individual’s data will not be released. Instead, de-identified data is analysed within a secure, monitored environment.

Who has access?

Doctors, nurses and other healthcare professionals in NHS Genomic Medicine Centres have access to information about the patients they are caring for. Researchers need to apply to access the de-identified genomic and health data in the data centre. Read more about who has access to the data and current research projects.

Scientists and clinicians will access the data for a variety of research. This could be to:

  • Improve diagnosis of rare disease.
  • Understand how genomics impacts on health and healthcare.
  • Suggest which treatments might work best for an individual.
  • Understand the causes of disease better.
  • Develop new treatments.

Data in the 100,000 Genomes Project

More about data

Subject Access Requests

To find out about Participant data requests under the Data Protection Act and how you can submit a request, visit this page.

Data and Information Governance Policies

The following links open as PDFs