Biobanking

What is biobanking and why is it important?

Biobanking refers to the process by which samples of bodily fluid or tissue are collected for research use to improve our understanding of health and disease (see ‘Types of biobanking sample ’). Other information, such as height, weight and questions about things that may have a bearing on health (e.g. family history and lifestyle) may also be recorded at the same time, to provide the context for the samples. Often the samples are kept indefinitely or for several years, depending on the study, so that long term future research can be carried out. The researchers may track the health of the participants by looking at their past and future medical records, but only if people have given them permission to. 

The Human Tissue Authority has useful information for people interested in donating for research and The Nuffield Council on Bioethics has also recently issued a useful report called ‘Human bodies' donation for medicine and research (see 'Resources' section).
 
Some projects, such as the UK Biobank (see 'Resources' section), recruit large groups of healthy people from across the population, and then use the samples over time to see if we can work out why some people go on to develop particular illnesses or conditions while others do not. 
Other biobank projects are focused on specific conditions, and may involve both healthy volunteers and people with the condition in question. Samples may be collected initially for one very specific research study, and then be kept for future use in other research.
Sometimes family members of people with a particular condition are also recruited, so that researchers can compare their health and medical history with those of people who have the condition. 
The amount of time involved in taking part can vary depending on what type of donation is being made and how much additional information or testing is needed. As Jennifer explained above, sometimes only one short visit is involved. Sometimes people are invited (or can make a specific appointment) to take part at certain times or can donate samples during routine hospital care.
Whilst most people said it didn’t take up a great deal of time, a few warned that it can take quite a while in some studies, and recommended reading the information carefully to be sure what was involved. 
In addition to donating samples, people can also be asked to provide other information (e.g. height, weight, blood pressure and heart rate), answer questions about their lifestyle, or take part in other tests or procedures (e.g. eye tests, tests of mental function, scans).
Some people become involved in giving samples for studies which involve several visits. In projects such as the UK Biobank and other general biobanks people sometimes get asked if they would like to take part in further tests or questionnaires to help researchers understand specific aspects of health. Some of the healthy volunteers we spoke to had been invited to take part in several different ways.
Before agreeing to take part in biobanking, people were always informed in writing about what they would be expected to do, and could always say no to further involvement. (See ‘Information and questions’).
 
Information and samples gathered in biobanks can be shared with researchers in other countries across the world. This may include researchers in universities, government institutes or industry (such as pharmaceutical companies researching new drugs), but samples cannot be sold for profit.

Sharing information in this way means that research can be conducted on larger numbers of people. This could lead to a better understanding of health and the development of new treatments. (See also ‘Ethical issues and future use of samples’).
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Last reviewed February 2016.
Last updated February 2014.

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