Genomics England and GenOMICC Consortium COVID-19 Privacy Notice

Valid from 4th May 2020 

Who are we and what do we do? 

The Department of Health & Social Care set up Genomics England in 2013 as a limited company wholly owned by the Department of Health (company registration 08493132) to deliver the 100,000 Genomes Project. The Secretary of State is the only shareholder.  

We are continuing to use the data for research as agreed with our initial participants, and we are now operating the National Genomic Research Library and working with NHS England to deliver the Genomic Medicine Service.  

We are registered with the Information Commissioners Office to process this data. Our registration number is ZA021653.

What do we need and why do we need it? 

Genomics England Limited is working as part of the GenOMICC consortium to develop a powerful database of genetic sequences to enable researchers to better understand and help in the fight against COVID-19.

Our web form collects:  

  • Your first name, surname, date of birth, email address and contact telephone number
  • First part of your post code 
  • Your gender and ethnicity 
  • Whether or not you tested positive for COVID-19  
  • Whether or not you were treated for COVID-19 in a hospital Intensive Care Unit (and if so, which Intensive Care Unit)  
  • Whether or not you had mild symptoms of COVID-19  

In the first instance, we will assess the data and may invite you to take part in research. Our aim is to collect a group of people to contribute to our research where we can look at the different aspects of their genetic makeup up that might make them susceptible to the virus. Having information such as first part of post code, ethnicity and gender helps us ensure we are collecting enough representative data.

We also give you the opportunity to join our mailing list. If you tick the box to agree to this, we will only use your name and email address to allow us to send you emails.

Who will we share it with? 

To contact you about research, the information from the form will only be kept and used by Genomics England and the GenOMICC consortium members unless we get further permission from you. 

If you agree to join our mailing list, your data will only be used by Genomics England to send you information about what we do and what events we might have coming up, for example.   We may also ask you to do further surveys, but this will only be about our work.  The only information we will use for this purpose is your name and email address.

How long will we keep it? 

Genomics England maintains a retention schedule for all the different types of personal data we hold.  

The information held for contacting you about the research study will be kept for 2 years after the recruitment has completed and will then be deleted. This is because people may later decide they do not wish to take part and we may wish to recruit more participants to the initial study.  

You can stay on our mailing list as long as you like.  You will always have the option to unsubscribe or you can email us using the details below if you want to be removed.

Where will the data be held? 

Where Genomics England holds the data it will be held in our secure UK data centres. 

The contact information from the questionnaire is collected with a survey service called SmartSurvey. Their data is held within the UK and European Economic Area and you can read about their service here. 

Our mailing lists (where we will use only email and name) are held and managed using Mailchimp, a US Company which is a member of the US/EU privacy shield.  The US/EU privacy shield ensures your data is held with the same rights applying in the European Union.  You can read about their service here 

All data is protected by encryption at rest and when transferred to the latest standard.

What is the lawful basis for collecting this data? 

GDPR classifies your personal data in two ways:  

  • Personal data – such as your name, email address and phone number
  • Special category data – such as information relating to your health and including your DNA (your genomic sequence)  

For us to use your data, we must identify a lawful basis in the General Data Protection Regulation on which to process it. Below are the lawful basis’ we use:

Type of data Personal data (Article 6 GDPR) Special category data (Article 9 GDPR)
To allow us to contact you for research

Personal data

Special category data

We rely on Article 6(1)(a) – Consent

 

We rely on Article 9(2)(a) – explicit consent

 

So that you can receive more information from us by email

Personal data only

We rely on Article 6(1)(a) – Consent

 

n/a

Your rights over your data 

Genomics England takes your individual rights in data protection legislation seriously. These rights are to:

  • Be informed about how we use your personal data
  • Be provided with a copy of it
  • Object to, or restrict our use of it
  • Have it erased
  • Have it provided to another organisation in a common format
  • Be informed if we use it for profiling or in any automatic decision making

If you wish to make an individual rights request and to help us identify what information you require please use this form and send it to the email address below.

Contacting us 

If you need to contact us for any reason, please do so by writing at: 

Email: [email protected] 

Address: The Data Protection Officer
Genomics England Limited
Dawson Hall
Charterhouse Square
London
EC1M 6BQ 

The Data Protection Team will answer your query as soon as possible.  Genomics England has appointed a Data Protection Officer as required by law, and you can contact them in the same way. 

Your right to complain to the Information Commissioner 

You also have the right to complain to the UK Information Commissioner if you don’t feel we are using your data in line with your rights, or if you feel we haven’t dealt with your request properly.   

You can contact them at: 

Web: https://ico.org.uk/global/contact-us/
Helpline: 0303 123 1113 

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