2021 Information sheet for UK Biobank participants and relatives
This information sheet relates to the collection of a final sample for UK Biobank's coronavirus research and should be read in conjunction with the following information sheets that cover recruitment and provision of samples during months one to six of the study in 2020:
- Information sheet for UK Biobank participants, version 1.3, dated 19th May 2020
- Information sheet for relatives of UK Biobank participants, version 1.2, dated 19th May 2020.
In 2020, around 20,000 UK Biobank participants and their children and grandchildren kindly agreed to help UK Biobank undertake urgent research on the SARS-CoV-2 coronavirus that causes COVID-19. Each participant was asked to provide six monthly blood samples using a kit sent to their home and to complete a short questionnaire about possible symptoms of COVID-19. The results of this study are available here. In summary, these data showed that the extent of previous infection was highest in those who lived in London, who were younger and of black and ethnic minority background, and that the majority (88%) of participants still retained detectable levels of antibodies at least six months following infection.
We would now like participants in this study to provide another sample and to complete another short survey looking at possible COVID-19 symptoms since November 2020 (when the last blood samples were collected for this study). The primary objective of this study extension is to determine how long antibodies to the SARS-CoV-2 infection last over an 18-month period following infection.
If you agree to help, we will send you a finger-prick blood sampling kit (the Thriva coronavirus antibody test kit) so that you can take a small blood sample, which you will then need to post to a laboratory for analysis. Taking the blood sample is simple and quick to do.
Please take the time to read this information carefully. It explains why we are asking you to help and what it would involve.
You do not need to provide any further consent to provide this final sample – you will automatically be sent a kit unless you tell us that you no longer wish to provide blood samples. You can opt out by clicking on this link and following the on-screen instructions, but we very much hope that you will continue to help us.
Thank you for your continued support
This sample collection is an extension of UK Biobank’s SARS-CoV-2 coronavirus research study that included 20,000 UK Biobank participants and their relatives who provided blood samples over a six-month period in 2020. This additional sample will enable researchers to look at how long antibodies to SARS-CoV-2 infection are likely to last over an 18-month period following infection in a varied sample of the UK population.
You have been asked to provide another blood sample because you consented to take part in the UK Biobank SARS-CoV-2 coronavirus research in 2020.
No; whilst we are keen for all participants to contribute, your participation is entirely voluntary. We do understand that you may not be able or wish to help further. If you decide not to take part, this will not affect your future relationship with UK Biobank. If you no longer wish to participate, please let us know by visiting https://biobank.ndph.ox.ac.uk/covid19/nomoresamples/ and following the on-screen instructions.
We will provide your name and address in confidence to Thriva Limited who will assemble and send you the blood sampling kit (please note that they will not use your contact details for any other purpose and will remove them from their files after the study has been completed).
The kit will include instructions on how to provide a blood sample. You will be asked to:
- use the lancet provided to prick your finger and produce about 10 drops of blood (which is only about 1/10th of a teaspoon);
- guide the blood drops into the tube provided, and then seal and label it; and
- return your blood sample to the laboratory in the pre-paid envelope.
We would also like you to complete a short online symptoms survey similar to the survey you completed during 2020.
If the laboratory identifies a problem with your sample (e.g. there is not enough blood, the blood has clotted or it was not labelled correctly), you will automatically be sent a replacement kit so that you can submit another sample for analysis if you are willing to do so.
When a person is infected with SARS-CoV-2, several antibodies are produced in response to the viral proteins, including nucleocapsid and spike proteins. The vaccines currently approved for use in the UK only trigger antibodies against the spike protein, not the nucleocapsid protein.
Your blood sample will be sent to a laboratory that will test it for antibodies to the nucleocapsid protein. A positive test result will tell us that you have previously been infected with SARS-CoV-2.
All UK Biobank participants and their relatives who consented to take part in the UK Biobank SARS-CoV-2 coronavirus research in 2020 are eligible to participate.
We advise people with certain conditions not to take a blood sample. These are:
- participants with untreated clotting or bleeding disorders
- participants who have had a mastectomy and there is swelling of the arm.
If you have had an operation to remove lymph nodes (e.g. a mastectomy), avoid pricking your finger on this side. If you have had a bilateral mastectomy, please contact your GP to confirm whether it is safe for you to take part.
You do not need to do anything apart from checking that we still have the correct postal address and a mobile phone number (if you have one) on record for you. You can do this by logging in to the UK Biobank participant website using your date of birth and clicking on ‘Contact Details’. We will automatically send you a blood sampling kit over the next few weeks. When we are ready to despatch your kit, we will send you an email and text message to tell you that it is on its way to you in the post.
If you decide that you no longer wish to participate in this study, please let us know by clicking on this link and following the on-screen instructions.
It may be a few weeks before a kit is sent to you, so we will email you before your kit is despatched to let you know when to expect it.
If possible, please collect your blood sample within a week of receiving your kit and mail it back to us on the same day. You can take the blood sample at any time of the day (but please avoid taking it on a Saturday to avoid weekend mail delaying its receipt at the laboratory).
We may send you an email reminder if you have not returned your blood sample within four weeks of the kit having been sent to you.
The blood sampling kit used and the process followed for this sample is slightly different to that used for the first six samples. The kit will contain full instructions about how to take the blood sample safely and easily. These instructions can also be found on our website, along with a video showing how to collect the sample.
If you receive a kit and then decide that you do not wish to provide the blood sample, you do not need to let us know. Please do not return the kit to the laboratory; simply dispose of the kit in your usual household waste and ignore any reminders to return your sample.
For the study findings to be useful, and so that we can incorporate the findings into the UK Biobank resource, it is important that the blood sample is not supplied by anyone else.
If there is a problem with your kit that prevents you from obtaining a blood sample, a replacement kit can be requested by logging in to the UK Biobank participant website, clicking on ‘Request new kit’ and providing details about any problems encountered with your sample collection kit.
If you have an adverse reaction, are harmed as a result of taking the sample or had any other problems that did not require you to request a replacement kit, please contact our Participant Resource Centre on 0800 0 276 276.
Please attach the label supplied with your kit (on the return form) to the sample tube, and package the sample and unused lancets as described in the kit instructions. Post the envelope as soon as possible after having taken your sample.
Please adhere to government restrictions that might be in place when mailing samples. For example, if you have been advised to stay at home, please ask another member of your household, a friend or a neighbour to post your sample to us instead. To help ensure that samples are returned to us as soon as possible, please try to post your sample in a priority postbox. If this is too difficult or inconvenient, please use your nearest postbox but please do not take your sample to a post office to post it over the counter as they are not able to accept COVID-19 related packages.
Your blood sample will be tested for antibodies to the nucleocapsid (N) protein that is produced following infection with the SARS-CoV-2 coronavirus.
Your test result will be incorporated into the UK Biobank resource and made available (in a de-identified form so that you cannot be identified) to approved researchers for research.
No. As with previous blood samples provided for this study in 2020, your test results will not be sent to you, your doctors or anyone else - this is in accordance with the consent you provided when you agreed to take part in this study in 2020. The findings of the study will be published on the UK Biobank website.
Samples are being collected for research purposes only. If you are worried about having COVID-19, you should follow the current government/NHS guidance about obtaining a diagnostic test.
There are no direct benefits to you as an individual, although your involvement will enable important research to take place to understand the extent of coronavirus infection, how long antibodies are likely to last, and why some people get more severe disease than others. This, in turn, may help scientists to find new ways to manage the outbreak and to prevent or treat COVID-19.
Participation in the study involves collecting a blood sample using a finger-prick device called a lancet. This produces a small (less than 2mm) hole in the skin.
You may experience slight discomfort when using the lancet (people have described the feeling as a slight sting, much less than you would experience in a typical blood collection with a needle and syringe). As with any cut, there is a small risk of infection and/or bruising. However, the equipment is sterile and following the instructions provided in the kit (in particular, cleaning the skin before and afterwards) will minimise any risk of infection.
The process and products in the kit are similar to those used routinely for collecting blood samples for a wide range of healthcare purposes, including for home measurement of blood glucose levels in the management of diabetes.
Yes, this study has received favourable ethical opinion from the North West – Haydock Research Ethics Committee, 21/NW/0157.
The information obtained in this study will be treated in exactly the same way as all of the other data that we have collected about you. It will be stored securely by UK Biobank for many years, and provided only in a de-identified form (such that no participant can be identified from their data or samples) to approved researchers for medical and other health-related research (including scientists in other countries and in commercial companies).
We will add the results from all of these studies to the UK Biobank resource for other researchers to use. Scientists must make public the results of all research based on the resource so that everyone can benefit from it. You can find details of research that is being conducted using the UK Biobank resource and related publications on our website.
We have strict measures in place to protect your confidentiality, which should prevent identifiable information from being used – inadvertently or deliberately – for any purpose other than to support this study:
- We do not include any details that will identify you in any information or samples we provide to researchers.
- We keep any information that might identify you (such as your name and address) separately from other information about you in our database.
- We use advanced computer security technologies to prevent unauthorised access to the computers that hold personal information.
- Our procedures comply with international standards (ISO/IEC 27001) for information security and management. We are externally audited and we comply with the guidance contained in the UK Government’s ten cyber security steps.
- We restrict access to personal information as much as possible, and all research staff working for us sign confidentiality agreements as part of their employment contracts.
The way in which UK Biobank collects, shares and uses your information is explained on our website. This includes an explanation of the way in which we protect your data and remove any personal identifiers before making any data available to researchers.
For the purposes of this sample collection and analysis, we have appointed Thriva Limited as a third party data processor. Thriva will only use your personal data for the purpose of this sample collection and analysis and only as instructed by UK Biobank. At the end of the sample collection and analysis, Thriva will delete any personal data that they have processed about you.
Who do I contact if I have any questions or concerns?
If you would like further information or have any concerns about anything to do with UK Biobank, please refer to our frequently asked questions, telephone our Participant Resource Centre free of charge on 0800 0 276 276 (Monday to Friday 9am to 5pm) or email us at email@example.com.
Alternatively, if you would like to write to the person in charge, please send your letter to Professor Sir Rory Collins, Principal Investigator, UK Biobank, 1-2 Spectrum Way, Adswood, Stockport, Cheshire, SK3 0SA. We shall reply to your letter in writing, unless you enclose your telephone number so that we can call you to discuss your concerns.
UK Biobank Limited (company no. 4978912) is a registered charity in England & Wales (1101332) and in Scotland (SC039230).
IRAS project ID 299116 Version 1.0 16/Sept/2021