FAQs about the GenOMICC COVID-19 study

Read Frequently Asked Questions about Genomics England’s involvement in the GenOMICC COVID-19 study. These FAQs will be regularly maintained. For FAQs about taking part in the study, visit the dedicated website.

If you have any questions not answered on this page, please get in touch with the Genomics England Service Desk via the portal or on 0808 2819 535 (UK toll-free).

General questions about the study

A wide range of expert organisations have been involved in developing this project:

  • The GenOMICC (Genetics of Mortality in Critical Care) consortium of ITUs, led by Dr Kenneth Baillie, Consultant in Critical Care Medicine, University of Edinburgh
  • Genomics England, with Sir Mark Caulfield as the scientific lead and Parker Moss as the Partnerships lead
  • NIHR BioResource
  • Relevant leadership from NHS EnglandPublic Health England (PHE), Health Data Research UK (HDR UK) and NHS Digital
  • Academic leads from the universities of Oxford, Kings College London, Liverpool, Edinburgh, Cambridge, Cardiff, Glasgow as well as the Wellcome Sanger Centre in Cambridge
  • Illumina Laboratory Services (ILS) in Cambridge

We expect to see some signals around genes involved in blood group determination (this has already been established). We will be looking very carefully at immune system genes as this would be an obvious place for differences to be important. We will also be looking carefully at genes with instructions for the particular kind of cell docking bays that allow the virus to break into our cells.

Otherwise, we have an open mind. Only your genomes will give us the answer.

The human genome code is 3 billion letters long. 99.9% of it is the same, one human to another. The other 0.1% is the bit that makes each of us unique. Some of the differences between us are healthy ones while others are not, but we can’t say for sure which are harmful changes until we can compare thousands of genomes. Another issue is that a difference which might be healthy in one population – say of Indian heritage – could be harmful in another population. This is why having samples from as many ethnicities as possible is so important.

The first genomes from our severe volunteers came through in June 2020. With luck and the very hard work of our scientists, we hope to have some preliminary results within six months. We will carry on working on these genomes to produce results as quickly as possible.

Please note that our volunteers for both the severe and mild groups will not receive any individual, personalised results as this is not a clinical programme. However, what we discover through your help will be of value in the next wave of the pandemic. When you sign up for the study, we will ask you if you are happy for us to tell you more about the outcomes from the research, later down the line.

Together with the University of Edinburgh and the GenOMICC consortium, we plan to match the demographics of the patients recruited for mild comparison group with those brought in to the severe group through intensive care units. At the moment, there are not enough patients in the severe group to know exactly how we should match it for the mild volunteers, so we are currently accepting all eligible volunteers. But as the severe group grows in number, we will be able to see if there is a pattern of who is worse affected – whether that is older people, those with specific health conditions, or individuals from specific ethnic minority backgrounds.

Initial studies, such as the ‘Disparities in the risk and outcomes of COVID-19’ by Public Health England, have shown that ethnic minority groups are disproportionately affected by the coronavirus, so having more volunteers from ethnic minority backgrounds is incredibly important.

Another study, in which our Chief Scientist Professor Sir Mark Caulfield was involved, suggests that many of the expected factors (such as socio-economic) are not enough to explain the disparities. This means must look at genomic differences for more answers, and we must try to match those severely affected with those who were only mildly affected.

Genomics England is in a unique position to harness its capabilities, partnerships and data set to try and understand why some people are so badly affected by the virus. Because we know so little about the virus as yet, it is better not to put all our scientific eggs in one basket but instead, look at the virus in a number of different ways. This will help increase our likelihood of success, and ability to implement robust plans for the future.

Data security and access

Once our sequencing partner Illumina has sequenced patients’ whole genomes, they will send this back to Genomics England. We will then strip identifiable, personal data from this, and the de-identified genomic data will be stored in our secure database, the National Genomic Research Library. Only validated researchers with express permission are allowed to access the raw data.

This data will be protected to the same high standards as the data collected from the 100,000 Genomes Project.

Read more about data in the Research Environment and National Genomic Research Library on our Data in the COVID-19 study page.

Consent to use genomic data will be obtained from patients or their families, utilising the GenOMICC study’s existing network of research nurses and clinicians across the country.

Genomics England’s priority has always been to ensure that the data of all participants is protected. Any data that researchers can access has been de-identified. This data cannot be removed or copied by researchers. We are committed to full transparency about the use of people’s data. Read our full privacy notices for more information.

Most of us use cloud services for things like storing photos and music on our mobile phones. Cloud services are actually high security warehouses filled with massive computing computer. Genome data is enormous, and we use a cloud service from Amazon Web Services (AWS) – based in the UK – to provide a secure cloud computing and storage infrastructure. We use another tech company called Lifebit to help researchers wrangle this huge quantity of data, using their unique technology platform. We joined forces with AWS and Lifebit to ensure that all the data we look after is highly secure, while allowing researchers to do their analysis flexibly.

Read the full announcement for our partnership with Lifebit and AWS on our news page, and watch our video on cloud storage below:

Involvement and impact on 100,000 Genomes Project participants

Participants of the 100,000 Genomes Project are a key part of the jigsaw in the COVID-19 study.

People’s genomes contain many changes which are normal and not associated with ill health. Because we have the health records and genomes of the people that took part in the 100,000 Genomes Project, we can use their data to help check whether changes we see in COVID-19 patients’ genomes are just healthy changes, or likely to be associated with a harmful response. Their data will be of huge value in this programme.

We are very grateful to the participants in the 100,000 Genomes Project who have agreed to have their data used in this way.

Due to the COVID-19 pandemic, work on the NHS Genomic Medicine Service and the National Genomic Informatics Service (NGIS) was put on hold. However, when the NHS is ready to restart, Genomics England will be working closely with them.

Although many participants will have received a result at this stage, we are aware that there are still some participants who have not received anything yet. We have also promised to do reanalysis for all 100,000 Genomes Project participants, and additional findings for those who have asked for them. Unfortunately, this work is now being delayed due to our focus on COVID-19. Genomics England and NHS England have jointly written a letter to participants, which you can download below.

Download the letter here