Participant data requests under the GDPR and Data Protection Act 2018

Genomics England holds data about each of the participants in the 100,000 Genomes Project:

  • We hold your medical records.  A copy of this data is available through your GP.
  • We hold 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.

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.

All the data described above relates to you and your health problem alone. It is all held in a secure Data Centre along with your DNA data (your whole genome sequence).

Your whole genome sequence is around 3 billion letters long and written in code so it won’t mean very much to most people. This is what it looks like:

If you would like a copy of your whole genome sequence we can show you this on our screens in our London offices but because we’re not your doctors, we can’t tell you what it means for your health.

For more information about accessing and updating your personal information, please see our Privacy Notice for Participants in the 100,000 Genomes Project here.

What we can do for you is put your medical records, your health data, and your genome sequence into our secure dataset and use all this information together to understand why you developed your condition and how to treat it better in the future.

If you would like to request more information, please download this form and submit your request in writing to:

Information Governance Lead
Genomics England
Queen Mary University of London, Dawson Hall, Charterhouse Square
London, EC1M 6BQ