Taking part in biobanking involves donating samples of body fluid and tissue from human participants for use in research. The most common types of sample that the people we spoke to were invited to donate were blood and urine (for example in the UK Biobank). Other types of sample included samples from cancer tumours, spinal fluid, fat samples, and umbilical cord blood. People may also be asked to give saliva samples (for example in studies of DNA).
Both healthy people and people who had particular health conditions told us that most frequently they were asked to donate blood samples. They were aware that their blood could be used for a number of different tests.
Some people told us that they had been invited to provide urine samples as well as blood. For people who had a health condition or who were being monitored during pregnancy, this could often be done during routine appointments.
A few people who took part frequently in diabetes studies as healthy volunteers described having biopsies of fat samples. They explained that the fat was extracted from their stomach or thighs using a needle. As the procedure was conducted under local anaesthetic, participants were awake during it. They said it can be uncomfortable and there may be some swelling or bruising afterwards, but they felt well informed and well looked after. (See also ‘What is involved in taking part?
Another regular healthy participant, Elaine, reflected that as time has gone on she has been asked to take part in studies involving more invasive procedures, perhaps because she is now known to staff as a willing volunteer.
Some people we spoke to who had cancer donated blood samples, while others donated parts of their tumour for research. These tissue samples were taken during the operation to remove the tumour. This is convenient for participants and generally they could see no reason not to allow what would otherwise be waste material to be used in this way.
Some of the people who had Motor Neurone Disease (MND) donated spinal fluid in a procedure called a lumbar puncture. During a lumbar puncture you usually have to lie on your side and curl up into the fetal position. The area at the bottom of your back is cleansed with disinfectant, which some people said felt really cold. A needle is then inserted into the spine. This procedure is also performed under local anaesthetic, so the patient is awake throughout.
Not everyone with MND who took part in biobanking chose to donate spinal fluid. They either were afraid that the lumbar puncture may cause them pain or previously had a bad experience of one.