PRIVACY NOTICE

This privacy notice will inform you about how we at StoreGene Ltd (StoreGene) look after your personal data and tell you about your privacy rights and how the law protects you.

It is important that you read this privacy notice together with any other privacy notice or fair processing notice we may provide on specific occasions when we are collecting or processing personal data about you so that you are fully aware of how and why we are using your data. 

This notice will cover:

• Who we are and important information
• Data Processor and Controller
• Data Protection Officer
• Changes to our privacy notice
• Your duty to inform your healthcare provider of changes
• The type of personal information we collect 
• How we collect your data
• The purpose and the legal basis for use of your data
• Data security and storage
• Data retention
• Your legal rights

StoreGene is a technology company providing genomic testing, storage and analysis services using their platform the Clinical Genomic Operating System.

The platform allows the individual or anyone involved in their care to order, test, upload and analyse their genome data. The platform is web based, and supports encrypted storage in the cloud. The data can be accessed only by the team involved in the individual’s care and any specialists that they wish to pass the data on to.

StoreGene is the processor and is responsible for the processing of your personal data under the instruction of the controller (collectively referred to as StoreGene, “we”, “us” or “our” in this privacy notice). 

Healthcare providers act as the controller of your personal data and have instructed StoreGene to act on their behalf to give you the best possible care.

Name: Mark Bartlett
Address: Centre for Cardiovascular Genetics, 5 University Street, The Rayne Institute, London, WC1E 6JF

E-mail: data-request@storegene.com

You have the right to make a complaint at any time to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues (www.ico.org.uk). We would, however, appreciate the chance to deal with your concerns before you approach the ICO so please contact us in the first instance.

We keep our privacy notice under regular review. This version was last updated on 03rd September 2024. Historic versions are archived and can be obtained by contacting us. We will notify your health care provider in case of a material change to our privacy notice.

It is important that the personal data processed is accurate and current. Please keep your healthcare provider informed if your personal data changes during your relationship with us.

We currently collect and process the following information:

1. Personal data including name, contact details and characteristics
2. Medical data including NHS/Hospital number, health data (disease and medication history) and risk scores
3. Genetic data including whole genome data and genotypes

We will only use your personal, medical and genetic data with your explicit consent, when the law allows us to as instructed by your healthcare provider. Your data is sent to us by direct entry or sent to us by your healthcare provider. 

Please find in the table below a description of all the ways we plan to use your personal data, and which legal basis we rely on to do so.

We may share pseudonymised information with UK based laboratory partners to coordinate genetic testing on behalf of your healthcare provider with your consent.

Under the General Data Protection Regulation (GDPR), the lawful bases we rely on for processing this information are:

• Your consent. You are able to remove your consent at any time. You can do this by contacting us or your health provider
• We have a contractual obligation.
• We have a legal obligation.
• We have a vital interest.
• We have a legitimate interest.

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to third parties. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

We do not store any of your data on any device that is used to access our platform. Images and video are captured directly from the browser and sent to our cloud database. 

Your data will be stored with our selected cloud provider on a secure server. This service has server-side encryption including strict key access controls and auditing.

We will only retain your personal data in line with yours or the data controller’s discretion to fulfil the purposes of processing, while satisfying any legal, regulatory or reporting requirements. We may retain your personal data for a longer period in the event of a complaint or if we reasonably believe there is a prospect of litigation in respect to our relationship with you.

To determine the appropriate retention period for personal data, we consider the amount, nature and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal, regulatory, tax, accounting or other requirements.

Details of retention periods for different aspects of your personal data are set out in line with NHS guidance 

Personal, medical and genetic data are retained in line with NHS guidance for up to 8 years, or until either the termination of the contract with the capturer of the data, or their (or your) request to delete it

In some circumstances you can ask us to delete your data: see your legal rights below for further information.

In some circumstances we will anonymise your personal data (so that it can no longer be associated with you) for research or statistical purposes, in which case we may use this information indefinitely without further notice to you.

Under data protection laws you also have the right to:

• Access your personal data – this enables you to receive a copy of the personal data we hold about you and to check that we are lawfully processing it.
• Request correction of your personal data – this enables you to have any incomplete or inaccurate data we hold about you corrected, though we may need to verify the accuracy of the new data you provide to us.
• Request erasure of your personal data – this enables you to ask us to delete or remove personal data where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal data where you have successfully exercised your right to object to processing (see below), where we may have processed your information unlawfully or where we are required to erase your personal data to comply with local law. Note, however, that we may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.
• Object to processing of your personal data – you have the right to object to the processing of your data when we are processing your personal data based on our legitimate interests (or that of a third party) and there is something about your particular situation which makes you want to object the processing on this ground as you feel it impacts on your fundamental rights and freedoms. You also have the right to object to the processing of your data for direct marketing purposes. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which overrides your rights and freedoms.
• Request restriction of processing your personal data – this enables you to ask us to suspend the processing of your personal data in the following scenarios: if you want us to establish the data’s accuracy; where our use of the data is unlawful but you do not want us to erase it; where you need us to hold the data even if we no longer require it as you need it to establish, exercise or defend legal claims; you have objected to our use of your data but we need to verify whether we have overriding legitimate grounds to use it.
• Request transfer of your personal data – we will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.

If you wish to exercise any of the rights set out above, please contact data-request@storegene.com

If required StoreGene will seek approval from the health provider as the data controller, before being able to act on your request. The response to your request will be at the discretion of the data controller. StoreGene commits to initiate this approval process within seven days of receiving any request. 

The response to your request from the data controller should be provided within a month of confirming your identity. Occasionally it could take longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.

After contact we may request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that your personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response and aim to do this within seven days.