THE NORTHERN IRELAND BIOBANK RESEARCHER PRIVACY NOTICE

Queen’s University Belfast (“we”, “us” and “our”) is committed to protecting your personal data. The notice is addressed to researchers who apply for samples from the Northern Ireland Biobank (NIB) via an online portal https://www.nibiobank.qub.ac.uk/nibresearcher  (“you” and “your”), or those who undertake peer review for the NIB. This Privacy Notice tells you why we need to collect personal information about you, what we will do with it, and how we will look after it. It also tells you about your legal rights in relation to your Personal Data. If you have any questions about this privacy notice, please contact us on the details provided below.

WHO WE ARE

1. We are Queen’s University Belfast, a university with a reputation for excellence in education and research and a member of the Russell Group. Founded in 1845 as Queen's College Belfast, we became an independent university in 1908. This notice has been produced for the Northern Ireland Biobank (NIB). NIB is a research tissue bank, established as a joint initiative between Queen's University and the Health and Social Trusts in Northern Ireland to facilitate translational biomarker research.

HOW YOUR PERSONAL DATA IS COLLECTED

2. Information you provide: Your contact details and, if relevant, information about your research study, will be held on the NIB information management system and this will be managed according to the principles set out in the Data Protection Act 2018.  This is known as your “Personal Data”.

3. Data from other sources: We also collect information about you from other sources and this also forms part of “Personal Data”. This includes information from:

• as you interact with our website we may automatically collect information about which pages you visit on our site and where you are from. This information may be collected by using cookies or other similar technologies. For more information on how we use cookies and similar technologies please visit our cookie policy available at http://www.qub.ac.uk/Legal/

HOW WE USE YOUR PERSONAL DATA

4. We use your Personal Data and Sensitive Personal Data in the following ways:

• To maintain a record of those applying to NIB for human samples
• To link the distribution of human samples to specific researchers
• To follow up with you regarding academic outputs arising from the use of samples provided by NIB
• To maintain a record of those who peer-review applications on behalf of NIB.

LEGAL BASIS FOR COLLECTING AND USING YOUR PERSONAL DATA

5. We will only use your Personal Data if we have valid reasons for doing so. These reasons are known as our “legal basis for processing”. The legal bases for processing your Personal Data are,

For processing your personal data, such as your name etc. our legal basis is:

• 6 (1) e - Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller

For processing special categories of (sensitive) personal data, our legal basis for processing, in accordance with GDPR and the Act, is;

• (j)  processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

WHO WE SHARE YOUR DATA WITH

6. In line with our Data Protection Policy and Procedures we can share your information, including Personal Data and Sensitive Personal Data, with the following parties for the purposes set out above:

• We will share information on your application and your research protocol for the purposes of peer review. This will only be shared under a confidentiality agreement with individuals deemed to have appropriate expertise, who will give their specialist opinion on the quality of your research before access to tissues is approved.
• We will publish a summary of your research on the NIB website and in our annual report and this will include the name of the Chief Investigator and the Institution.
• We have a third party Information Management System provider with whom there is a legally binding contract, which protects any personal data transferred.

DATA PROCESSING OUTSIDE EUROPE

7. We will not transfer your Personal Data and Sensitive Personal Data outside of the European Economic Area.

HOW LONG YOUR INFORMATION WILL BE KEPT

8. We will keep your Personal Data and Sensitive Personal Data indefinitely from the date of application for samples. We will only keep your information if we need it for one of the reasons described above. We place great importance on the security of the Personal Data that we hold, including the use of physical, technological and organisational measures to ensure your information is protected from unauthorised access and against unlawful processing, accidental loss, alteration, disclosure, destruction and damage.

YOUR RIGHTS

9. The Data Protection Act 2018 provides you with a number of legal rights in relation to your Personal Data, including the right:

• to request access to your Personal Data;
• to request correction of your Personal Data that is wrong or incomplete;
• to request erasure or the restriction of processing of your Personal Data;
• to request the transfer of your Personal Data in a structured; commonly used machine-readable format;
• not to be subject to automated decision making; and
• to withdraw your consent.

10. If you wish to exercise any of the rights set out above, or require further information about any of the rights, please contact us.

11. There may also be times where we cannot stop using your Personal Data when you ask us to, but we will tell you about this if you make a request.

CONTACTING US

12. If you have any questions or comments about this privacy notice, the University’s Data Protection Officer can be contacted at:

Sandra McDonald

Data Protection Officer

Registrar’s Office
Lanyon South
Queen’s University Belfast
University Road
BT7 1NN
info.compliance@qub.ac.uk

COMPLAINTS

13. You have the right to complain about how we treat your Personal Data and Sensitive Personal Data to the Information Commissioner’s Office (ICO). The ICO can be contacted at:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

CHANGES TO THIS NOTICE

14. We may update this Privacy Notice from time to time. We will notify you of the changes where we are required by law to do so.