Participant data requests under the Data Protection Act
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).
But when it comes to getting a copy of your whole genome sequence, this is more complicated. That’s because some of your genome is the same as that of your close relatives. So, if we gave you a copy of your DNA data, we would also be giving you information about them. The Information Commissioner does not allow us to do this. The only thing we can do is show you your sequence on a computer screen here in our London offices.
The full 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:
And because we’re not your doctors, we can’t tell you what it means for your health.
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 a copy of your data held by Genomics England, please download the form and submit your application in writing to:
Information Governance Lead
Queen Mary University of London, Dawson Hall, Charterhouse Square
London, EC1M 6BQ