- I've never heard of UK Biobank. Are you an official organisation?
Yes. UK Biobank is a nationwide study over the next few years to follow the health of 500,000 people across the UK to determine why some people develop disease and others don't. The Government, through the Department of Health, was instrumental in setting up UK Biobank. Just over half our funding comes from the Government - from the Department of Health, the Medical Research Council and the Scottish Executive - and the remainder comes from charity (the Wellcome Trust). We are accountable to the Government. More information on UK Biobank is available in the further information leaflet, which is available from the website (www.ukbiobank.ac.uk) or I can send you a copy.
- How did you get my name and address?
Your name, address, date of birth and GP details have been provided by the NHS to invite people in your area who aged 40-69 into the study. We do not have any other information about you (i.e. medical information) and it is in full compliance with the Data Protection Act.
Your date of birth allows us to check that you are aged 40-69 and your GP details mean we can write to your practice to let them know that their patients are being invited to participate.
- Isn't this in breach of the Data Protection Act?
No, we are processing these contact details on behalf of the NHS (the 'data controller') in order to contact you. The records that we keep will be maintained in full accordance with the terms of the Data Protection Act.
- I thought all medical records were confidential?
We have not seen your medical records or have any access to them. The NHS and the Department of Health have given us permission to process only your name, address, date of birth and GP details on behalf of the NHS.
- Have you seen my medical records?
No, we have not seen these. The only information we have is your name, address and date of birth, and we know nothing else about you. Any other information which we obtain will come directly from you when you attend the centre, if you decide you would like to take part. If you don't want to take part, we will discard your details and will not contact you again.
- Did my doctor give you permission to contact me?
No. Your GP has been informed that patients from their practice have been invited to participate in UK Biobank. However, your GP will not know which patients have been invited to take part. We obtained permission to invite you from the NHS and the Department of Health.
- Why did you choose me?
You are between the ages of 40 and 69, which is the age range of people who are being recruited into the study.
- Have you contacted me because there is something wrong with me?
Absolutely not. We know nothing about your health
- I know a lot of people who are the same age as me and they haven't been contacted. Why not?
We are trying to contact as many people in the local area, in the correct age range, as possible. We obtain contact details from the NHS and other people who you know who are in the age range will most likely be invited to participate in the next few months.
- My friend/colleague/relative really wants to take part as well. How can they sign up?
Sorry, it is not possible for people to volunteer. This is because our approval from the ethics committee requires that we write to people first, so that they have the opportunity to consider carefully what taking part involves. It is likely, however, that most people in this area who are aged 40-69 will be sent an invitation over the next few months (the website has details of when new assessment centres will be opening).
- I am adopted and don't know anything about my original family. Can I still take part?
This does not matter at all for the study. There is still a lot of information you can give us that will be extremely useful for our research.
- I am overweight/smoke cigarettes/drink alcohol/am a drug addict/ take prescribed drugs - do you still want me to take part?
Yes, of course. We are studying people's lifestyle and habits and will ask you questions about these. If any of the questions make you feel uncomfortable you may leave the answer blank and move on to the next question. We will not make any judgement about any aspect of your health or lifestyle, or offer advice. If you have any particular worries about any of these issues, you should discuss them with your own doctor.
