Thank you to everyone who supported the GenOMICC COVID-19 Study.

With your help, we have now reached our target of participants for the study. 

Since we launched the GenOMICC COVID-19 Study in May 2020, we have been overwhelmed with the incredible response we received – thousands of people volunteered to take part and we are very grateful to everyone who registered.

What is the GenOMICC COVID-19 Study?

Genomics England partnered with the GenOMICC consortium, led by the University of Edinburgh, to analyse and compare the whole genome sequences of approximately 15,000 people who had been severely affected by COVID-19 with 15,000 volunteers who were only mildly affected or had no symptoms at all. The study aimed to find out if there were genetic reasons that cause some people to become severely ill, as well as to help doctors make better decisions when treating patients with COVID-19.

Preliminary findings from the study were published in December 2020, and we are looking forward to our next set of analyses.

We are also very lucky to already have more than 120,000 genomes thanks to those that took part in the 100,000 Genomes Project. These provided an incredibly important pre-COVID reference set for the researchers involved in this study.

Data in the GenOMICC COVID-19 Study

To be able to sequence a genome – the DNA building blocks that make everyone unique – we need to collect a sample of DNA. This comes from a small blood sample of about 9ml (equivalent to approximately two tablespoons) taken by nurses. 

Participants’ consent let us sequence their DNA and store it. We also asked for consent to access and store relevant parts of their health records, now and in the future. We need their 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. Our study participants’ genomes could provide vital help here. 

To maintain participants’ privacy, information that could identify them is removed from their health records and their 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 participants’ genomes have been sequenced and mapped, they are 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. Study participants’ clinical data – collected through both the NHS and from the blood sample given to 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. 

The below information on sample collection and consent is only applicable to volunteers who have been accepted into the study but have not yet had their appointment. Recruitment to the study is now closed. 

Sample collection and consent 

At your appointment, the nurse from the COVID-19 study will ask for your consent to collect a small blood sample of about 9ml. They will also confirm you consent to let us sequence your DNA and store it, as well as your consent to access and store relevant parts of your health records, now and in the future. 

You can download a copy of our consent form if you would like to read in advance of your appointment. 

Our trained nurses are provided through Trust MSS. They will contact participants to arrange appointments using the information provided during registration, and will also collect consent at the appointment. 

Please download and read this Participant Information Sheet for more details on the study and what it means to consent to be part of it. 

 Download the Participant Information Sheet

Loading...