Participant data requests under the GDPR and Data Protection Act 2018

Genomics England holds data about each of the participants in its initiatives, including:
 

Your medical records. A copy of this data is available through your GP.

Information relating to your cancer or rare condition and its treatment. A copy of this health information is available from the person responsible for your care, usually a specialist consultant.

All the data described above relates to you and your health alone. It is all held in a secure data centre, along with your whole genome sequence data.

Genomics England uses this health data to analyse and interpret your whole genome sequence. We are looking for something that might explain or help your condition. We then write a report that will include definite causes if we find them as well as any suspected causes. This goes back to your clinical team. With their extra knowledge about you and your health, your team might agree or disagree with our conclusions.
 

A copy of this report is available from the person responsible for your care.

For more information about accessing and updating your personal information, please see our privacy notice.