FAQs about the GenOMICC COVID-19 study

Read our Frequently Asked Questions about the GenOMICC COVID-19 study. These FAQs will be regularly maintained.

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

Volunteering for the study

If you are eligible, we will need to collect a small blood sample from you. We will be in contact with more details on how to arrange an appointment for this to take place.

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 ‘Being part of 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