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.
  • 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.

Your whole genome is around 3 billion letters long

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 or other data we hold about you, please download this form. Please note that because we’re not your doctors, we can’t tell you what it means for your health.

Genomics England uses your health data to help analyse and interpret your whole genome sequence. We are looking for something that might explain or help your condition. Where possible, we identify genetic changes that we think are definite causes as well as suspected causes. This information is sent to your clinical team and local Genomic Laboratory Hub. They will interpret these results using their extra knowledge about you and your health to generate a report. A copy of this report will be available from the person responsible for your care.

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

If you would like to request more details about what we do with your information – such as have it explained to you or have a copy sent to you – please download this form.

You can email it to us at [email protected] or if you are unable to do this you can write to us at the following address:

Data Protection Manager
Genomics England
Queen Mary University of London
Dawson Hall
Charterhouse Square

Genomics England is committed to meeting our statutory responsibilities and will make every effort to provide you with a response within the required 30 calendar days.

Coronavirus (COVID-19) update: As of 16 March 2020, we have requested the majority of our staff to work remotely to help reduce the spread of the virus. This means that our post may not be regularly checked. We sincerely apologise for any delays this may cause in answering your request, but we will endeavour to respond to you as soon as possible and within 30 days. If you have any questions, please email [email protected].