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Information sheet for relatives

Summary

This study is being conducted by UK Biobank (www.ukbiobank.ac.uk), a charitable company set up by the Wellcome Trust charity and the UK Government’s Medical Research Council. It involves 500,000 men and women who joined the study in 2006-10 when they were 40-69 years old. They answered lots of questions, allowed us to make a number of measurements and provided samples of blood which have been analysed (including for genetic markers).

In addition, all of them agreed to allow us to obtain their medical and other health-related records in order that scientists could use all of these data to improve the prevention, diagnosis and treatment of a wide range of illnesses. The UK Biobank database is now being used by thousands of research scientists around the world to help tackle the COVID-19 pandemic.

We are now setting up an important study to determine the extent of previous infection with the SARS-CoV-2 coronavirus that causes COVID-19 in different regions across the UK. We have already asked UK Biobank participants if they would agree to help with this study by providing a finger-prick of blood (approximately 10 drops, which is about 0.5ml or one tenth of a teaspoon) using a kit sent to their home every month for at least six months. These blood samples will allow us to find out the extent of previous infection (by testing for antibodies to the coronavirus) in different groups of people across the UK. This information will be critical for planning a safe end to the current lockdown and a return to normal life.

However, as UK Biobank participants are now at least 50 years of age, we need to extend recruitment to younger people in order to obtain information about the extent of previous infection at all ages. Consequently, we asked the participants to forward an invitation to their adult (aged over 18 years) children or grandchildren asking them if they might also be willing to provide a finger-prick of blood every month for at least six months

Before you decide whether to take part, it is important for you to understand why we are asking for your help and what is involved. Please take the time to read this information sheet carefully and discuss it with others if you wish.

If anything is not clear, or if you would like more information, 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

Thank you for your interest

UK Biobank has already recruited 500,000 men and women (aged 40-69 years at recruitment) between 2006 and 2010 across the UK.  The purpose of this major health resource is for researchers worldwide to study how health is affected by lifestyle, environment and genes, with the aim of improving the prevention, diagnosis and treatment of a wide range of illnesses.

By analysing answers, measurements and samples collected from participants, researchers may be able to work out why some people develop certain diseases while others do not. This should help us to find new ways to prevent early death and disability from many different diseases.

Like giving blood for transfusions, UK Biobank is not intended to help directly those who take part – but it should give future generations a much better chance of living their lives free of many diseases.

You have been invited to contribute to urgent research into the coronavirus that causes COVID-19 because you are the child or grandchild of an existing UK Biobank participant who thought that you might like to take part.

This research aims to determine the extent of previous infection with the SARS-CoV-2 (coronavirus) that causes COVID-19 in different regions across the UK. This research will help us to understand what proportion of the population has had the virus (by measuring blood antibodies) and to find out why some people develop severe COVID-19 disease and others do not.  This research may, in turn, help to identify ways to prevent and treat the disease.

In order to examine the spread of this coronavirus infection in different regions across the UK and in different age groups, we need help from younger participants (as UK Biobank participants are aged 50 or older).

It is important that all types of people join UK Biobank. We would like you to take part whether you are in good health or have health problems.

If you participate, your contribution to the UK Biobank resource will be limited to research into the coronavirus that causes COVID-19. Your samples and data will be treated in the same way as that of any existing UK Biobank participants but will be restricted to research into the coronavirus that causes COVID-19.

You can find more information about UK Biobank on our website (www.ukbiobank.ac.uk) and social media channels.

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

To help researchers determine the extent of previous infection with this coronavirus in different regions across the UK, and to find out why some people get more severe disease than others, we will ask you to provide consent 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.
  • agree to allow your health to be followed for many years by UK Biobank directly through linkage to routine medical and other health-related records.
  • agree to being re-contacted by UK Biobank (e.g. to answer some more questions), although this would be entirely optional.
  • agree to have your blood samples and health-related information stored by UK Biobank for the purposes of COVID-19 research.

 It is important to note that your samples and data will be treated using the same data protection and security procedures as existing UK Biobank participants and your data will only be used for the purposes of research into COVID-19.

Your blood samples will be tested for the SARS-CoV-2 (coronavirus) antibodies. We may also perform some genetic testing on your sample (that measure a range of markers across your whole genome) so that researchers can determine whether genetic factors are important in determining whether people develop severe COVID-19 disease or not.

If you would like to take part, please click on the link in your invitation email. This will take you to an online form to give consent to take part and to provide some personal details. This will include your name, email address, mobile phone number (if you have one), postal address, date of birth, sex, and ethnicity.

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 are not selected to take part, UK Biobank will delete all information provided by you during the consent process as soon after its storage is no longer necessary.

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

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 and post it back on the specified 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, plus data from your linked health medical records, will be made available to approved researchers for the purposes of COVID-19 research.

In the future, we may also re-contact you to ask some more questions, although giving such additional help would be entirely optional.

Your test results (i.e. coronavirus antibody testing and your genetic results) will not be sent to you, your doctors or anyone else, in accordance with the consent that is required for this study.  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).

Participation involves a minimal risk in relation to the use of personal information. Great care will be taken to ensure the confidentiality of all data (see below) and the risk to participants of a breach of confidentiality is considered very low.

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

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 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

We will never pass your information, samples or test results to insurance companies or employers. Also, we will not allow the police, security services, relatives or lawyers to access your information, unless we are forced to do so by the courts.

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 auditedand 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.

The study will be most valuable if as few participants as possible withdraw from it. If you have any concerns, please 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, so we can discuss these with you.

You can withdraw at any time after giving your consent. There are 3 levels of withdrawal:

  •  “No further contact”: This means that UK Biobank would no longer contact you directly, but would still have your permission to retain and use information and samples provided previously and to obtain and use further information from your health records.

  • “No further access”: This means that UK Biobank would no longer contact you or obtain further information from your health records in the future, but would still have your permission to use the information and samples provided previously.

  • “No further use”: This means that, in addition to no longer contacting you or obtaining further information about you, any information and samples collected previously would no longer be available to researchers. UK Biobank would destroy your samples (although it may not be possible to trace all distributed sample remnants) and would only hold your information for archival audit purposes. Your signed consent and withdrawal would be kept as a record of your wishes. Such a withdrawal would prevent information about you from contributing to further analyses, but it would not be possible to remove your data from analyses that had already been done.

If, having discussed the options and your concerns, you did decide to withdraw then we would send you a Withdrawal Form to confirm your wishes in writing. This form can be completed by you or, if you are not able to do so for some reason (such as illness), by someone able to act on your behalf.

UK Biobank has been set up by the Wellcome Trust medical charity, and the Medical Research Council. It is also supported by health research charities (such as the British Heart Foundation, Cancer Research UK and Diabetes UK), and Government bodies (the Department of Health, Scottish Government, and the Welsh Assembly Government).

UK Biobank is a not-for-profit charitable company set up to act as the legal owner and guardian of the database and sample collection. In signing the consent form, participants transfer all property and intellectual property rights in their samples and data to UK Biobank. The charity’s role is to protect this valuable resource so that scientists can do a wide range of health-related research in the future.

UK Biobank collaborates with scientists from more than 20 British Universities who have developed its design. These plans have been reviewed by an independent group of international scientists and approved by the NHS North West Research Ethics Committee. In addition, the independent Ethics Advisory Council monitors the development and use of the resource.

If you would like further information or have any concerns, please refer to our frequently asked questions, telephone our Participant Resource Centre free of charge on 0800 0 276 276 (Monday to Friday9am 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 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.

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