last updated 18 Nov 2024
Privacy Notice
Your data
Queen Mary University of London (QMUL) is the Sponsor for this study based in the United Kingdom. We will be using information from you (your questionnaire and genetic data), hospitals and GP surgeries (your medical records), and from national NHS sources (NHS England). QMUL will act as the Data Controller for this study - this means that we are responsible for looking after your information and using it properly.
The legal basis for processing your data
Our legal basis for data processing under the U.K. GDPR is ‘performance of a task in the public interest’ i.e. research and, for health and any other special category 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 long your personal data is kept
QMUL will keep identifiable information about you for 20 years after the study has finished.
How your data is shared
Data for the Genes & Health project is analysed by scientists and researchers from universities, academic institutions, and life sciences industry around the world. The data are stored and analysed in secure research databases that are controlled by QMUL. We do not send out datafiles with individual level data to researchers.
When researchers want to use the Genes & Health resource they must apply to the study. All applications are reviewed by the Genes & Health Executive at QMUL, and if the research uses a lot of data or is about a sensitive topic then we also ask our Community Advisory Board to review the application. These reviews make sure that researchers are only doing research that will benefit health in the UK.
Researchers must work inside a Secure Data Environment at all times (also known as a Trusted Research Environment, your data is only held in London (UK)), are not able to take your data away with them, and can only download the overall results of their research after an approval process - not the data from individual volunteers.
How your data is processed
It is important that researchers can access and use the data only inside a secure data 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 QMUL but may be provided by third parties like Solita/Google Cloud Platform (for genetic and health record data). All platforms will have full CyberEssentials and ISO27001 certfieid accreditation. These databases allow approved researchers to use the data inside a secure environment and to access high performance cloud computing services, but don’t let researchers take out data on individuals. Secure platforms like these are recommended by the NHS for analysing large amount of data. Data will be stored only in the UK for cloud and other service providers.
With access to your data, researchers will look for patterns between your genes and your health. For example if lots of people with a certain disease or condition all have a similar genetic makeup then that genetic makeup might provide clues about their disease, or if a group of people are diagnosed with a disease early or later in life then scientists can look for genetic changes that might be the cause.
Your genetic and health data will be held in 'pseudonymised' format. This means researchers cannot link to your personal details. However the Chief Investigator is able to link if strictly necessary.
Your NHS England Data
The Genes & Health study receives health data from NHS England (used to be NHS Digital). When researchers at other universities or companies want to use your NHS England data they have to sign a sublicence agreement that holds them to strict security standards, and makes sure they can only do approved health research. Those researchers will be able to analyse your health data from NHS England inside a secure environment without seeing your name or other identifiable details.
Your rights and further information
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.
If you have questions about how data is processed for the Genes & Health project, please contact us on elgh [at] qmul [dot] ac [dot] uk
Additional information, including the Data Protection Officer’s contact details, can be found in the Privacy Notice for Research Participants and at https://www.qmul.ac.uk/privacy/
