Privacy notice for research participants
How we use your personal information (for research participants).
1. Why have I been directed to this webpage?
The general information published on this page is intended to supplement the specific information that you have already been given (for example on a participant information sheet or a consent form) in connection with your participation in a research study or project run by academic researchers at the University of Edinburgh. The below information – which we are obliged to supply you with – applies to all studies and projects that we run. In the unlikely event that there is any contradiction between this general information and the specific information that you have already been given, the specific information takes precedence.
2. Who will process my personal information?
The information published here applies to the use of your personal information by the University of Edinburgh, including its Departments, Institutes and Research Centres/Units. You have already been told if you are participating in a research study that the University is running jointly with other organisations, such as other universities or hospitals.
You have already been told about the types of personal information we will use in connection with the specific research study or project you are participating in and (where applicable) its sources, any data sharing or international transfer arrangements, and any automated decision-making that affects you.
3. What is the purpose and legal basis of the processing?
As a publicly-funded University, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Thus, in general terms, we use your personal information (including, where appropriate, sensitive personal information) to carry out academic and/or translational research in the public interest.
On rare occasions, we may have asked for your consent to use your personal information for research purposes. If we asked for your consent, you can withdraw this at any time; you should have already been told how to do this but if not, or if you are in doubt, please use the contact details below. Please note that your consent to use your personal information (which we rarely request) is separate from your ethical consent to participate in a particular research study (which we usually request for relevant types of research).
You are not legally or contractually obliged to supply us with your personal information for research purposes.
4. How can I access my personal information?
Various rights under data protection legislation, including the right to access personal information that is held about you, are qualified or do not apply when personal information is processed solely in a research or archival contact. This is because fulfilling them might adversely affect the integrity of, and the public benefits arising from, the research study or project.
The full list of (qualified or inapplicable) rights is: the right to access the personal information that is held about you by the University, the right to ask us to correct any inaccurate personal information we hold about you, to delete personal information, or otherwise restrict our processing, or to object to processing (including the receipt of direct marketing) or to receive an electronic copy of the personal information you provided to us.
If you have any questions regarding your rights in this context, please use the contact details below.
5. How long is my information kept?
You have already been told about the long-term use (and, where applicable, re-use) and retention of your personal information in connection with the specific research study or project you are participating in. General information about how long different types of information are retained by the University is published in the retention schedules on our website.
6. Who can I contact?
If you have any questions about the particular research study you are participating in, please use any contact details you have already been supplied with.
If you have any general questions about how your personal information is used by the University, or wish to exercise any of your rights, please consult the University’s data protection webpages. If you need further assistance, please contact the University’s Data Protection Officer (firstname.lastname@example.org).
7. How do I complain?
If you are not happy with the way your information is being handled, or with the response received from us, you have the right to lodge a complaint with the Information Commissioner’s Office.
8. Are changes made to this webpage?
This webpage was last updated in June 2018. It is reviewed when necessary and at least annually. Any changes will be published here.