Biobanking involves the donation of blood, tissue, fat, spinal fluid, or other bodily fluids, such as urine. For more information on the types of samples that people can donate, please see ‘Types of biobanking samples’.
Participants can be healthy volunteers or people with illnesses or long-term health conditions. For the people we spoke to who had health conditions, biobanking donations were sometimes made alongside their regular appointments.
In biobanking projects that involve more invasive procedures including donating blood, tissue or fat biopsies, people risk experiencing some side effects, but these are usually minimal. One of the most common side effects people reported was bruising or discomfort. Lumbar punctures can be uncomfortable for some people. Paul was not put off by this, but Roland was.
People also explained the side effects that were more specific to biopsies. They said that they had a puncture mark where the needle was inserted and some swelling in that area. Again, most people said they were not put off by this, although Elaine said it made her think twice. However, as Elaine said, ‘The biggest risk is that you might come away with a bit of a bruise….and that’s right down at the bottom of the scale, isn’t it?’
In some biobanking projects, people are invited to take part in other types of assessments alongside giving a sample, such as MRI scans. People can experience claustrophobia in the MRI scanner, a large tube shaped machine. They are advised to speak to the staff before the MRI if they are worried about claustrophobia. Some people are also troubled by the noise in MRI scanners (which can be like a loud clicking or banging).
Research staff informed people of the possible side effects (bruising, swelling and risk of infection) of the procedures before they were carried out. They stressed to them that they could withdraw at anytime if they were uncomfortable. People also said the staff explained what they were doing during the procedure.
Staff tried to minimise people’s discomfort during the procedures. They also advised people how to counteract side effects by pressing on the area to stop bleeding and minimise bruising, or by lying still for a while. One man explained how he was injected with an anaesthetic to numb the area before fat biopsies were taken.
People also prepared themselves for side effects. One man said he always read a great deal to make sure he was fully informed before agreeing to any studies.
In addition to donating samples, people may be invited to provide other information by answering questions about their family history and lifestyle.
In some cases (for example answering lifestyle questions as part of the UK Biobank) they were asked to base their answers on the last seven days, which could be difficult if the last week may not have been typical for them.
Some were positive about these questions as they helped them to reflect on their lifestyle and change their behaviour, but others thought they were quite personal.
Other measurements were also taken, including height and weight.
The UK Biobank
has an information page explaining the different assessments people are asked to complete.
People usually had to use a computer to answer questions about lifestyle and family history. These included questions they thought were quite personal and private. However, they said they were able to see what other people had on their computer screens and so felt that there was not enough privacy.
People were also invited to undergo other types of tests. These can include: blood pressure measurements, activity measurements, hearing and eye tests, assessments of reactions and reflexes, tests of mental agility and keeping a diary.
The UK Biobank took place in various locations that were not necessarily health centres or hospitals. For example, Julie was surprised her appointment took place in a local shopping centre. Most people thought the locations for biobanking projects were convenient and that actually taking part was efficient and did not take very long. However, Clare was surprised at the length of time the appointment took (usually 2-3 hours).
For those who had to travel some distance to attend appointments, their travel costs were reimbursed. In some biobanking projects people were even were driven to and from the appointment in a taxi, which was helpful if it was an early start.
Some people were prepared to take time off to attend biobanking appointments, but others said they could only do it if evening or weekend appointments were offered. For example, the UK Biobank offers Saturday appointments, and weekday evening appointments till 7pm.