- I don't mind doing it, but I don't want my doctor to know. Will you agree not to tell him/her?
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
- I don't want anyone in my family to know that I am taking part. How will you arrange this?
When you have booked an appointment date and time we will write to you to confirm this appointment and we will ask if you would be wiling to provide an email or mobile telephone number. This is so that we can send you a reminder message shortly before your appointment, You can withhold these details if you prefer. If you give us a confidential telephone number or address where we can reach you, we will make sure that this is the only contact information recorded. The initial assessment will involve one visit only. However, at the time of the visit, we will ask your permission to contact you again in the future to invite you for further research. You are, of course, free to accept or decline as you prefer.
- Can insurance companies find out about the results of research on samples?
No they cannot. Your samples and information are stored anonymously - that means any information which can identify you, such as your name and address, date of birth or NHS number is taken off your data and samples and stored separately. We will only grant access to this anonymised data for ethically and scientifically approved research into the causes and treatment of disease.
- Will current or future employers be able to gain access to the information?
No they will not. Your samples and information are stored anonymously - that means any information which can identify you, such as your name and address, date of birth or NHS number is taken off your data and samples and stored separately. We will only grant access to this anonymised data for ethically and scientifically approved research into the causes and treatment of disease.
- Will the police have access to the information?
We will not grant access to the police, the security services or to lawyers unless forced to do so by the courts (and, in some circumstances, we would oppose such access vigorously).
- Will drug companies be able to use my information?
Yes. It is important that drug companies can access the information in order to research potential new drugs and treatments. All potential users of the Biobank resource, whether employed by universities, government, charities or commercial companies, will have access only to anonymous information ( that is, they will not have information that identifies participants) and will be held to the same scientific and ethical standards.
- How can you guarantee confidentiality?
The security and confidentiality of your data are our top priorities. We operate stringent security measures, which include sophisticated computer controls and building access systems. The main methods we use to protect your confidentiality are:
- Your DNA samples and information are stored anonymously - that means any information which can identify you, such as your name and address, date of birth or NHS number is taken off your data and samples and stored separately.
- Information is encrypted. We do need to be able to identify your samples and information so that we can track your medical records, contact you again or destroy your samples if you withdraw. We do this by using a code. Only those UK Biobank staff with access to the code will be able to connect you with your information and samples.
- Access is kept to a minimum. Very few staff have access to the key code. The computers which hold your information are protected by industry strength firewalls and are tested, so they are safe from hackers.
- Your DNA samples and information are stored anonymously - that means any information which can identify you, such as your name and address, date of birth or NHS number is taken off your data and samples and stored separately.
- How will you access my medical records?
If you consent to participate UK Biobank will access health information from a number of sources such as ONS, death records, cancer registration, hospital episodes statistics, Scottish morbidity records, and other health-related records as they evolve over time.
- What happens to my information if I become seriously ill or die?
Once you have given us your consent, we will continue to use your information up to and after your death, unless you withdraw from UK Biobank. It is important that researchers have access to information on people who have died to help them understand how a disease progresses.
- Can my relatives get access to my information?
No they cannot Your samples and information are stored anonymously - that means any information which can identify you, such as your name and address, date of birth or NHS number is taken off your data and samples and stored separately. We will only grant access to this anonymised data for ethically and scientifically approved research into the causes and treatment of disease.
- What are you going to do with the information and samples?
The information and samples which you give us will be used for research to better understand and treat disease. Clearly, at this time, it is not possible to be specific about all of the tests that researchers might undertake in the future
- Will foreign researchers/organisations be able to use my information?
Yes, if important research is going on outside the UK which may lead to a medical breakthrough, we will allow foreign researchers to use UK Biobank.
- Who will own my genes and DNA?
You own your own genes and DNA. As part of the consent procedure you donate your samples for research purposes. Some scientific discoveries may be made using your samples, together with those of other participants, to benefit everyone. New drug treatments are always patented for a limited period (maximum 20 years)
- Why have I received an invitation to join UK Biobank when I have opted out of having a Summary Care Record?
As part of the on-going development of the NHS Care Records Service, Summary Care Records are being created for individuals who do not say they don't want one. Summary Care Records contain limited but important information which can be accessed when a patient needs care in an emergency or out of hours. Having this information available enables the provision of better, safer care because, for example, it means that a clinician can check what medications a person may already be taking before a decision is made on a course of treatment. The work is currently taking place in the Early Adopter Primary Care Trusts (PCTs)of Bolton, Bury, Bradford and Airedale, South Birmingham and Dorset. People who do not want their information to be stored in this way, or who want to limit how it is shared, can do so. People who have chosen to limit their participation in the Summary Care Record programme may still receive an invitation to join UK Biobank (and other medical research projects). This is because contact details for the purpose of inviting people to join UK Biobank have been provided, with the relevant permissions, by the NHS, based on the people who are registered to receive NHS services. Contact details for the purpose of inviting people to partake in research are processed confidentially on behalf of the NHS and without access to any medical information. Opting out of the Summary Care Record does not mean that people have opted out of the other important health and research functions provided by the NHS.
