For personal information that we collect from UK Biobank participants in relation to the UK Biobank study, please see our 'Basis of your participation' page.
For personal data that we collect from job applicants, please see our ‘Candidate Privacy Notice’.
1. Important information about who we are
- through your use of this website, including any data you may provide through this website when you provide feedback to us, apply to take part in PPIE activities or sign up to attend one of our events;
- when you provide feedback to us following a UK Biobank event that is not provided through the website (i.e. in paper format);
- when you interact with us over social media, by email, by telephone, post or in person;
- when you provide us with a testimonial for public use;
- when we book travel or accommodation on your behalf; or
- if you are a researcher, when you register or make an application to access the resource, sign up to access the AMS or if you have publications of interest to UK Biobank containing your details.
The website is not intended for children and we do not knowingly collect data relating to children.
Controller and contact details
If you are an EU based researcher, we have appointed DataRep as our Data Protection Representative in the European Union for the purposes of the GDPR. If you wish to contact DataRep you can contact them by email at email@example.com quoting "UK Biobank Limited", via post addressed to Datarep, 3rd and 4th Floor, Altmarkt, 10 B/D, Dresden, 01067, Germany, or via their online forum as www.datarep.com/data-request.
Third-party links on the website
2. The data we collect about you
Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).
We may collect, use, store and transfer different kinds of personal data about you which we have grouped together as follows:
- Identity Data includes your name, title, date of birth and sex/gender;
- Contact Data includes your postal address, email address, social media handle(s), telephone numbers and correspondence history (including recordings of phone calls with you);
- Technical Data includes internet protocol (IP) address, browser type and version, time zone setting and location, language preference, browser plug-in types and versions, operating system and platform, and other technology on the devices you use to access this website;
- Financial Data includes bank account number, sort code and building society roll number;
- Travel Data includes passport details (including passport number, issuing country and expiry date) and frequent flyer membership or travel loyalty details;
- Profile Data includes participant ID, feedback, survey responses and testimonials.
- Education Data includes the type of qualifications you may have.
- Event Registration Data includes information about your dietary requirements or accessibility requirements when you attend an event;
- Usage Data includes information about how you use our website;
- Researcher Data includes your name, CV, publications, any complaints regarding your publications, your department and associated institution / employer, allocated unique identifying number (if applicable) and Access Management System access details (such as user name and password); and
- Special Category Data includes any personal data revealing your racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership, genetic data, biometric data for the purpose of uniquely identifying you, data concerning health or data concerning your sex life or sexual orientation. You may provide this to us voluntarily, for example as part of a testimonial or using another method of communication with us.
We do not request any information about special category personal data or about criminal allegations, convictions or offences and would ask that you do not provide such information to us unless you are a Participant in the UK Biobank study and we specifically request this from you (and please see Basis of your participation for an explanation as to how we use such information).
3. How is your personal data collected?
We use different methods to collect data from and about you including through:
- Direct interactions. You may give us your identity data, contact data, profile data, financial data, education data, travel data and/or special category data by filling in our feedback form, participant expense or engagement claim form applying to take part in PPIE activities, signing up to receive communications from us, or by corresponding with us by post, phone, email or otherwise. This includes personal data you provide when you contact us, give us feedback or provide us with a testimonial. If you are a researcher this will include personal data you provide us when you make an application to access the resource or sign up to access the UK Biobank Access Management System;
- Third parties or publically available sources. This would include analytics providers such as Google Analytics, publically-available information on social media platforms such as twitter or Instagram or publically-available information contained in research publications. If you are a researcher, this would include publically-available information on public registers and publically-available internet sites as well as subscription services that provide screening against prohibited and/or sanctioned persons.
4. How we use your personal data
We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:
- Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests. When we talk about our legitimate interest, this generally means the interest of UK Biobank in conducting, running and promoting the UK Biobank study. We make sure we consider and balance any potential impact on you (both positive and negative) and your rights before we process your personal data for our legitimate interests. We may have other legitimate interests, and if appropriate, we will make clear to you at the relevant time what those legitimate interests are;
- Where we need to comply with a legal obligation. This means processing your personal data where it is necessary for compliance with a legal obligation that we are subject to; and
- Where it is necessary for scientific research purposes.
Generally, we do not rely on consent as a legal basis for processing your personal data (where we do rely on consent, we will ask for it before we process the information).
Purposes for which we will use your personal data
We have set out below, in a table format, a description of all the ways we plan to use your personal data, and which of the legal bases we rely on to do so. We have also identified what our legitimate interests are where appropriate.
Type of data
Lawful basis for processing including basis of legitimate interest
To manage our relationship with you which will include:
(1) responding to an enquiry you may make
(2) asking you to leave feedback
(4) enabling proper management of UK Biobank events and to ensure compliance with equality law and / or food safety law
(5) enabling recruitment to our PPIE activities and to ensuring a balanced group for these activities
(6) arranging payment of your travel expenses or honoraria payments
(a) Identity Data
(b) Contact Data
(c) Financial Data
(d) Profile Data
(e) Event Registration Data
(f) Education Data
(g) Special Category Data
To book travel or accommodation on your behalf
(a) Identity Data
(b) Contact Data
(c) Travel Data
(d) Event Registration Data
To enable you to complete a survey
(a) Identity Data
(b) Contact Data
(c) Profile Data
(d) Usage Data
(e) Special Category Data
To promote the UK Biobank study, for example,
(1) where you voluntarily agree to provide us with a testimonial about your participation in the UK Biobank study or research you have published or conducted in connection to the UK Biobank study
(2) communicating with you directly (i.e. direct message or private message) on a social media platform if you create a post that relates to the UK Biobank study
(a) Identify Data
(b) Contact Data
(c) Profile Data
(d) Researcher Data(e) Special Category Data
To allow researchers to access the resource and AMS
(a) Identity Data
(b) Contact Data
(c) Researcher Data
To administer and protect UK Biobank and this website (including troubleshooting, data analysis, testing, system maintenance, support, reporting and hosting of data)
(a) Identity Data
(b) Contact Data(c) Technical Data
To use data analytics to improve our website, stakeholder relationships and experiences
(a) Technical Data
(b) Usage Data
Necessary for our legitimate interests (to keep our website updated and relevant, to develop UK Biobank and to inform our communications strategy)
Please note that where we have indicated in the table above that our processing of your personal data is necessary for us to comply with a legal obligation and you choose not to provide the relevant personal data to us, we may not be able to enter into or continue our engagement with you.
Change of purpose
We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose.
Please note that we may process your personal data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.
5. Disclosures of your personal data
From time to time we ask third parties to carry out certain business functions for us. These third parties will process your personal data on our behalf (as our processor). We will disclose your personal data to these parties so that they can perform those functions. Before we disclose your personal data to other people, we will make sure that they have appropriate security standards in place to make sure your personal data is protected and we will enter into a written contract imposing appropriate security standards on them. Examples of these third party service providers include service providers and/or sub-contractors, such as our IT systems software and maintenance, back up, and server hosting providers and external legal providers.
We may share your personal data with the following parties:
- The University of Oxford for the purpose of managing our relationship with you;
- If you are a researcher : (i) our Access Sub-Committee and Ethics Advisory Committee for the purpose of considering your application to access the resource; and (ii) our third party sanction screening provider for the purpose of conducting regulatory checks when you register with us; and (iii) our third party platform provider (DNAnexus) for the purpose of validating your access to the platform.
In certain circumstances, we will also disclose your personal data to third parties who will receive it as controllers of your personal data in their own right for the purposes set out above, in particular:
- If we transfer, purchase, reorganise, merge or sell any part of our business or the business of a third party, and we disclose or transfer your personal data to the prospective seller, buyer or other third party involved in a business transfer, reorganisation or merger arrangement (and their advisors); and
- If we need to disclose your personal data in order to comply with a legal obligation, to enforce a contract or to protect the rights, property or safety of our employees, Participants or others.
We may also share your personal data with third parties, as directed by you.
In limited circumstances, and only on a voluntary basis with your permission, we may share your testimonial about your research or participation in the UK Biobank study on our website.
6. International transfers
If any of our processing activities require your personal data to be transferred outside the UK, we will only make that transfer if:
- the country to which the personal data is to be transferred ensures an adequate level of protection for personal data;
- we have put in place appropriate safeguards to protect your personal data, such as an appropriate contract with the recipient;
- the transfer is necessary for one of the reasons specified in data protection legislation, such as the performance of a contract between us and you; or
- you explicitly consent to the transfer.
7. Data security
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 those employees, agents, contractors and other third parties who have a business need to know. 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.
8. Data retention – how long will you use my personal data for?
We keep some types of personal data for longer than others. We will only retain your personal data for a limited period of time. This will depend on a number of factors, including:
- any laws or regulations that we are required to follow;
- whether we are in a legal or other type of dispute with each other or any third party;
- the type of information that we hold about you; and
- whether we are asked by you or a regulatory authority to keep your personal data for a valid reason.
9. Your data protection rights
Under certain circumstances, you have rights under data protection laws in relation to your personal data.
You have certain legal rights, which are briefly summarised in the table below, in relation to any personal data about you which we hold.
You have the right to opt-out of marketing communications we send you at any time. This can be done by contacting us using the email address: firstname.lastname@example.org If you choose to opt out of marketing communications, we may still send you non-promotional communications , such as emails about your account or our ongoing business relations.
Where our processing of your personal data is based on your consent, which should not often be the case in respect of this website or your interactions with us, you have the right to withdraw your consent at any time. If you do decide to withdraw your consent we will stop processing your personal data for that purpose, unless there is another lawful basis we can rely on – in which case, we will let you know. Your withdrawal of your consent won’t impact any of our processing up to that point.
Where our processing of your personal data is necessary for our legitimate interests, you can object to this processing at any time. If you do this, we will need to show either a compelling reason why our processing should continue, which overrides your interests, rights and freedoms or that the processing is necessary for us to establish, exercise or defend a legal claim.
Should you wish to exercise any of your rights please contact the DPO using the details set out under the Controller heading in section 1 above.
What does it mean?
Limitations and conditions of your right
Right of access
Subject to certain conditions, you are entitled to have access to your personal data (this is more commonly known as submitting a “data subject access request”).
If possible, you should specify the type of information you would like to see to ensure that our disclosure is meeting your expectations.
We must be able to verify your identity. Your request may not impact the rights and freedoms of other people, e.g. privacy and confidentiality rights of our staff.
Right to data portability
Subject to certain conditions, you are entitled to receive the personal data which you have provided to us and which is processed by us by automated means, in a structured, commonly-used machine readable format.
If you exercise this right, you should specify the type of information you would like to receive (and where we should send it) where possible to ensure that our disclosure is meeting your expectations.
This right only applies if the processing is based on your consent or on our contract with you and when the processing is carried out by automated means (i.e. not for paper records). It covers only the personal data that has been provided to us by you.
Rights in relation to inaccurate personal or incomplete data
You may challenge the accuracy or completeness of your personal data and have it corrected or completed, as applicable. You have a responsibility to help us to keep your personal information accurate and up to date.
We encourage you to notify us of any changes regarding your personal data as soon as they occur, including changes to your contact details and telephone number.
This right only applies to your own personal data. When exercising this right, please be as specific as possible.
Right to object to or restrict our data processing
Subject to certain conditions, you have the right to object to or ask us to restrict the processing of your personal data.
As stated above, this right applies where our processing of your personal data is necessary for our legitimate interests. You can also object to our processing of your personal data for direct marketing purposes.
Right to erasure
Subject to certain conditions, you are entitled to have your personal data erased (also known as the “right to be forgotten”), e.g. where your personal data is no longer needed for the purposes it was collected for, or where the relevant processing is unlawful.
We may not be in a position to erase your personal data, if for example, we need it to (i) comply with a legal obligation, or (ii) exercise or defend legal claims.
|Right to withdrawal of consent
|As stated above, where our processing of your personal data is based on your consent you have the right to withdraw your consent at any time.
If you withdraw your consent, this will only take effect for future processing.