Interview on NHS-Galleri trial participation privacy notice
This notice is directed to participants in the NHS-Galleri trial, which is organised by GRAIL Bio UK Ltd. (the UK subsidiary of a U.S. company called GRAIL, LLC) in partnership with the National Health Service (NHS) and King’s College London (KCL). As explained in the Participant Information Sheet that you received when you joined the trial, GRAIL, LLC of 1525 O’Brien Drive, Menlo Park, California, 94025, USA is a company that has developed a blood test for early cancer detection and is providing money and equipment to support the NHS-Galleri trial.
Participants in the trial are now being given the opportunity to be interviewed about their experiences of the trial (Interviews), in written, audio, or video form. This notice describes how the personal information that you provide as part of the Interviews is used by GRAIL Bio UK Ltd and GRAIL, LLC.
This activity is separate from participation in the trial, so this is a separate privacy notice.
Who are the data controllers of my information?
GRAIL Bio UK Ltd. and King’s College London are joint data controllers for the NHS-Galleri trial and are responsible for coordinating the collection and use of your data under the trial. However, it is important to be aware that only GRAIL Bio UK Ltd. will be a data controller in relation to the processing of your personal information in connection with the Interviews.
What information does GRAIL receive about me?
The NHS-Galleri trial communications partner, Claremont Communications Ltd. (Claremont), will collect the personal information that you provide in scheduling and taking part in the Interviews on behalf of GRAIL Bio UK Ltd. This information will include your contact information (for scheduling the Interview), how you feel about being part of the trial, your reasons for taking part and whether your life has been impacted by cancer (for example, through your family or friends). You may also be asked to provide contact information so that you can be interviewed by Claremont again for more information about your experiences and opinions in the future. You will not be asked questions about your own health information, your test results or whether you are in the trial test or control group, and you can decline to provide some or all of the requested information.
Your information will be collected through electronic or written forms and, if you agree, photography, video, or audio recordings.
What does GRAIL do with my information?
Your personal information will be used to advertise, publicise, and support continued participation in, and otherwise promote, the NHS-Galleri trial, including on the trial website and social media, and in print publications, videos and other websites. In order to do this, GRAIL Bio UK Ltd. (or NHS-Galleri trial communications partner, Claremont, on GRAIL Bio UK Ltd.’s behalf) will share your personal information described above with print and online media companies, health professionals, organisations that provide support services (such as marketing firms) and with GRAIL, LLC and the NHS-Galleri trial partners (KCL and the NHS).
If these organisations use your personal information on their websites or in printed or video or audio publicity materials, they will use only your first name and the first letter of your last name together with your local area, such as your city or town (including where the image is accompanied by a text or photo caption) and not your full name, address or telephone number.
What is the basis for processing my information?
GRAIL Bio UK Ltd. needs a valid legal reason to process and use your personal information in connection with the Interviews. This is called a“legal basis.” GRAIL Bio UK Ltd.’s legal basis for processing your personal information is your consent, which we will obtain through a separate form.
How long will my information be kept?
GRAIL Bio UK Ltd. will keep your information for as long as needed to fulfil the purposes outlined in this notice and the consent form referred to above unless a different retention period is required by law. The consent form is valid for four years from the date of signing and the consent that you give will automatically expire after four years. GRAIL Bio UK Ltd. will not re-use any videos, images or recordings after this time without seeking your consent, but your personal information may continue to appear in films, publicity materials and publications that are already in circulation.
Will my information be transferred outside of the United Kingdom?
Your personal information may be transferred to the United States, where GRAIL, LLC is located. Importantly, any information that GRAIL, LLC receives will not contain your full name, address, or telephone number or other similar information from which you can readily be identified. Instead, the only information that GRAIL, LLC receives will be contained in the Interviews (including where relevant, your interview write up, photo, audio, and video recordings, along with your first name, last initial, and local area).
Some countries, including the United States, have been found by the United Kingdom (UK) government not to offer the same level of data protection as that found in the UK. GRAIL Bio UK Ltd. and GRAIL, LLC have entered into a data transfer agreement in a form approved by the UK government to ensure that your information remains protected after it is sent to GRAIL, LLC. Please contact firstname.lastname@example.org if you wish to obtain a copy of this standard data transfer agreement.
What are my rights?
Under data protection legislation you have certain rights in relation to your personal information, including the right to access, correct, erase, restrict, object to or withdraw consent for the use of your personal information. Because GRAIL Bio UK Ltd. does not know your identity, if you wish to exercise any of these rights, you should contact Claremont and they can direct your question to the appropriate person at GRAIL Bio UK Ltd.
You also have the right to make a complaint with the Information Commissioner’s Office (ICO) (the UK data protection regulator). For further information on your rights and how to complain to the ICO, please refer to the ICO.
Whom can I contact with questions?
Because GRAIL Bio UK Ltd. does not know your identity, you should address your questions to Claremont. GRAIL’s Data Protection Officer is reachable at email@example.com.