Data in the GenOMICC COVID-19 study
What we need, and how we keep your data safe
To be able to sequence your genome – the DNA building blocks that make everyone unique – we need to collect a sample of your DNA. This usually comes from a small blood sample of about 9ml (equivalent to approximately two tablespoons) taken by nurses from the COVID-19 study. Unfortunately we are not currently able to do saliva collection as this is not accurate enough for our purposes.
We need your consent to let us sequence your DNA and store it. We also need your consent to access and store relevant parts of your health records, now and in the future. We need your health records because a DNA sequence does not have much meaning without accompanying health records which allow us to ‘interpret’ it properly. For instance, childhood infections could be important. It is also becoming clear that COVID-19 has long lasting consequences. We need to know whether our genomes could help predict which people might be at risk of particular late onset complications. Your genome could provide vital help here.
To maintain your privacy, information that could identify you is removed from your health records and your health data (which we call de-identifying). As with the 100,000 Genomes Project, an individual’s data will not be released. Instead, this de-identified data is analysed within a secure, monitored environment. Participant privacy and confidentiality is vital in the GenOMICC COVID-19 study.
Only approved researchers – from academia, industry and the NHS – who have been vetted will be able to access the de-identified genomic and health data in our data centre. They need to apply for access, and if their application is approved, they are given secure access to the data centre through a virtual computer. All their activity is monitored and recorded.
All patient data is held in secure facilities based in the UK, which we regularly check and review the latest best practice for security. We are constantly testing to make sure our facilities are still protecting the data we look after, and we also engage with third parties to help us test security as an additional measure.
Genomics England’s Research Environment and the National Genomic Research Library
After your genome has been sequenced and mapped, it is sent to us at Genomics England and we place it within our trusted environment that only approved researchers have access to.
The National Genomic Research Library is a secure national resource of genomic, health data and samples managed by Genomics England in partnership with NHS England. Being able to compare all patient data in one place provides researchers with an opportunity to better understand diseases, develop new treatments and can lead to new discoveries. As a volunteer of the COVID-19 study, your clinical data – collected through both the NHS and from the blood sample you gave us – will be placed securely inside the Library.
Approved researchers can use the samples and data to study diseases and look for new treatments.
The Library is accessed using our Research Environment, a comprehensive resource that allows researchers to securely access de-identified genomic and other associated health data within the Library. It provides a trusted environment to allow researchers to carry out analysis without allowing the download of individual data.