2020 Information sheet for UK Biobank participants

You have been invited because you are a participant in UK Biobank.

No, it is entirely voluntary. We do understand that you may not be able or wish to help.

We will ask you to:

• provide a finger-prick of blood (approximately 10 drops, which is about 0.5ml or one tenth of a teaspoon) every month for at least 6 months (using kits we will post to you) for storage and testing of the SARS-CoV-2 (coronavirus) antibodies.
• fill out a brief questionnaire (provided in the kit) about any COVID-19 symptoms you may have had in recent weeks.

If you would like to take part, please log into the UK Biobank participant website. Here you can access an online form to confirm your willingness to take part and give consent to provide blood samples. It also asks you to confirm your contact details so that we are able to send you i) the blood sampling kits and ii) a text message (if you have a mobile phone) to remind you when it is time to take your blood sample.

This study involves obtaining samples from a nationally representative group of participants. This means it may not be possible to involve everyone who has consented to join.

Participants will be selected to take part based on their postcode, age and sex, so that we involve a range of people from across the UK. This process may take us a number of weeks to complete but we will let you know by email if we would like your help.

If you do not want to take part, then there is no need to do anything further.

We also want to involve younger individuals so that we can obtain a more accurate picture of the extent of previous infection with the coronavirus across different age groups. Consequently, we would like to request that you consider forwarding an invitation to your children or grandchildren over the age of 18 (if you have any) to determine whether they may be interested in joining the study. Whilst we are happy for more than one person in a household to register their interest in the research, no more than one person will be selected to participate. This is because of the high chance of co-infection within households.

Please do NOT send us your relatives’ personal details. If you think they might be interested in participating in this research, please let us know via the web-page when you sign up and we will send you an email to forward to them. Please talk to your relatives about the research before forwarding UK Biobank’s invite to them.

The study is only open to UK Biobank participants and their children and grandchildren aged 18 or over. If your partner/spouse is a participant in UK Biobank and has not yet received an invitation, they can register their interest by logging into the UK Biobank Participant website. Whilst we are happy for more than one person in a household to register their interest in the research, no more than one person will be selected to participate. This is because of the high chance of co-infection within households.

Before you receive your kit, we will email you to let you know when we would like you to take your sample. We will also send you an email and/or SMS reminder on the day. If possible, please take your blood sample on the specified day and mail it back to us on the same day. If this is not possible, please take the sample as soon as you can. However, we ask that you only do this on a Monday to Thursday to ensure that the sample arrives at the laboratory when it is operational.

Each kit will contain full instructions on how to take the blood sample, safely and easily. These instructions can also be found on our website, along with a video that shows you how to take the blood sample.

Please adhere to government restrictions relating to social distancing 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 postbox that is outside a post office. If this is too difficult or inconvenient, please use your nearest postbox.

Your blood samples will be stored until analyses relevant to the COVID-19 research are complete, after which they will be destroyed. The test results will be made available to approved researchers.

Just like the results of any other tests undertaken on samples you have previously donated to UK Biobank, 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 joined UK Biobank.  Samples will not be analysed immediately and are being collected for research purposes only. As such, participation should not be considered a health check.  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 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 providing a small amount of blood (about a tenth of a teaspoon). This is done using a fingerprick device called a lancet which produces a small (less than 2mm) prick. 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 draw) and, as with any cut, there is a small risk of infection and/or bruising. However, the process and products in the kit are used routinely in a wide range of healthcare applications, including measurement of blood glucose levels in the management of diabetes. The equipment is sterile and following the instructions provided in the kit will minimise risk of infection (such as cleaning the area before and after).

Yes, this study has received ethics approval from the North West – Haydock Research Ethics Committee, 16/NW/0274.

The information obtained from this blood collection will be treated in exactly the same way as the other data we have collected about you.

The data will also be kept by UK Biobank for many years. It will be provided in a de-identified form (such that no participant can be identified from their data or samples) to the UK Government and its agencies as well as to approved researchers for medical and other health-related research (including scientists working in other countries and in commercial companies).

We will put the results from all of these studies back into our database 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 done using the UK Biobank resource and the related publications on our website (www.ukbiobank.ac.uk).

We have strict measures in place to protect your confidentiality. These include the following:

• 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.

This should prevent identifiable information from being used – inadvertently or deliberately – for any purpose other than to support this study.

If you no longer wish to provide a monthly blood sample over the next few months, please let us know by clicking on the link in the email sent to you before you receive each kit.

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 ukbiobank@ukbiobank.ac.uk

Alternatively, if you would like to write to the person in charge, please send your letter to:

Professor 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.

IRAS project ID 299116                                  version 1.3, 19th May 2020