How are body tissues and information stored?
How do biobanks process and store samples and personal information?
What actually happens at the biobank?
Different biobanks use the information and samples stored in them for different research purposes. This could be to help develop new treatments or it could be to look for a new way to diagnose a condition.
When you donate to a biobank, your name is removed from your information and any samples you have provided and replaced with a unique number which links everything together. This means that although researchers know, for example, which blood sample goes with a particular set of personal information, they do not know who that person is.
Often, when donating to a biobank you will be asked to consent to the biobank having access to your personal information, usually via your GP. It’s important that you’ve considered how you feel about doctors and researchers having access to your information. If you want to be asked every time your details are used and for what purpose, you need to check that this will happen, because often biobank donation is done on a broad consent basis.
To read more about broad consent, see our information ‘Questions to ask before donating’
Depending on the type of sample, it will first be processed to enable it to be preserved and safely stored until it can be analysed by scientists in the laboratory. There are a number of ways this could happen, for example, blood will be separated into different fractions and then frozen, and biopsies taken from tumours could be embedded in paraffin blocks. These procedures are designed to prevent samples from being degraded by the environment once they leave the body, so that they can be used by research scientists in the laboratory at a later time.
Different biobanks treat samples differently and the way that they are processed will vary depending on the type of sample – for example blood, urine, saliva or a small sample of part of your body (called a biopsy).
This is a simplified outline of what happens at the UK Biobank.
For the UK Biobank, not much is done at the place where your samples are taken. This is because the biobank needs all samples to be treated in as similar a way as possible. If lots of different centres are doing things even slightly differently, the accuracy of the samples could be affected. Because high-quality data is crucial, only essential processing is done at the centres where the samples are collected. In an ideal world, the samples would be processed immediately after they are taken, but instead they are couriered to the central processing lab as soon after this as possible. It’s also more expensive to do all the processing in separate places.
When the blood samples are taken, they go into tubes that contain certain preservatives to protect them until they are processed.
They are labelled with bar codes and these are scanned and details entered into the IT system – this links the sample with a unique ID number.
For UK Biobank, five blood samples are taken and treated in different ways. For example, one sample of blood is put in a machine called a centrifuge. This spins it at a very high speed for 10 minutes, which makes the blood separate into its different parts (red blood cells, white blood cells, platelets and plasma). Another sample is left to clot for 25 to 30 minutes before being spun in the centrifuge. The times that the samples are spun is automatically recorded by the IT system. The samples are then kept in a fridge at 4°C until the end of the day when they are sent by courier along with all the others that have been collected that day to a central lab for further processing.
The samples are transported overnight and when they reach the lab in the morning they are processed as soon as possible. The processing here is all done automatically as this makes it much quicker and means lots of samples can be done at the same time. Once all the samples have been prepared for storage, they are separated into a number of smaller samples (called aliquots) – this means that blood from the same person can be used by dozens of different researchers. These aliquots are then deep frozen in liquid nitrogen and stored until they are needed, which may not be until months or years later.
Who can access information and samples?
Using biobank samples
The information and samples you donate to a biobank may be used by many researchers working in different areas. There will be a variety of reasons why they are doing research and they will be employed by different organisations.
These could include:
- Looking into how well hospitals in the NHS are operating
- A university or charity focusing on causes and treatments for a particular disease
- A commercial organisation such as a private health company using information to set their insurance costs
The information and samples in the biobank can only ever be used in the manner that the person who donated them consented to. But it’s worth bearing in mind that you may have given broad consent where it’s not possible to be precise about the type of research that will be done.
It’s important that you think about issues such as how you feel about researchers making a profit through work done using your donations. This could happen if researchers work for pharmaceutical companies – while any new medicine that is developed could offer a health benefit to many people, it will also make money for the company.
Getting access to information and samples
All biobanks will have a procedure that any researcher who wants to use the resources must go through in order to get access to them. This may vary a bit between different biobanks but there are some general principles that must be followed. You should be able to see a copy of this process for any biobank that you donate to.
Researchers have to make a formal request to use any material or data in a biobank and this must have been approved by a research ethics committee. This is a group of professional and lay people who decide whether or not a proposed research project meets certain ethical standards, and considers the safety, dignity and wellbeing of anyone who takes part.
Even after a researcher has been granted access, they must show that they have the means to keep these samples confidential when they are transferred from the biobank to the place where the research will be carried out.
Researchers can only use samples for the purpose that they requested them – there are strict penalties if they use them for anything else.
It will depend on each individual biobank as to whether or not they charge researchers to use the materials.
How can I be sure my information is kept confidential?
Protecting your confidentiality is fundamental to the biobank’s existence. The rigorous process of applying to use any of its resources is just one area of this. Every effort will be made to maintain your privacy and minimise any possible risk of you or anyone related to you being identified.
Anyone who works at the biobank and any researchers who use its resources must sign confidentiality agreements; they are also trained in how to protect sensitive, personal information. The computer systems that store the records are all securely protected with firewalls and passwords, and staff can access only the information that their work requires.
When you donate to a biobank, your information and any samples are given a unique number which is used to link them without using your name or anything else that could identify you. This means that although researchers can tell which person’s sample goes with what information, they do not know who that person is.
Your information is stored under the Data Protection Act and can’t be given to insurers or employers. Nor can it be used by the police or any other organisation for forensic purposes unless the courts specifically order it.