• Queen Mary University of London
  • Barts Health NHS
  • Bradford NHS
  • Manchester Uni

Data Processing Statement

Updated 16th June 2020

Your data

Queen Mary University of London is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Queen Mary University of London will keep identifiable information about you for 20 years after the study has finished.

Your rights to access change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

The Queen Mary University of London privacy notice and privacy notice for research participants prvoide more information about how data is used.

Our legal basis for data processing under GDPR is ‘task in the public interest’ and (special category for health data) ‘necessary for scientific research in accordance with safeguards’. Furthermore we have individual written consent from each volunteer, which also provides a basis under English Common Law.

How your data is processed

Data for the Genes and Health project is analysed by researchers from universities and companies around the world. The data are stored and/or analysed in secure research databases that are controlled by Queen Mary University of London.

It is important that researchers can access and use the data inside a secure environment, and that researchers have access to a lot of computing power in order to use modern analysis techniques. The databases used for Genes & Health data are controlled by Queen Mary University of London but may be provided by third parties like the UK Secure eResearch Platform (UK SeRP) and Solita/Google Cloud. These databases allow approved researchers to use the data inside a secure environment and to access high performance cloud computing services. Secure platforms like these are recommended by the NHS for analysing large amount of data.

If you have questions about how data is processed for the Genes & Health project, please contact Robin Lerner (r [dot] lerner [at] qmul [dot] ac [dot] uk).