Deciding whether to take part: Deciding not to take part
Deciding not to take part
A few people we talked to had chosen not to take part in biobanking. They gave a variety of reasons for their decision. These included: inconvenient timing; concerns about privacy of their information; and worries about any discomfort during invasive procedures. Others questioned the purpose of the project or felt that in large studies of the population they would not be missed.
Elaine and Richard both decided not to respond to an invitation to join the UK Biobank, for different reasons.
Gill took part but her husband decided not to and shared some of Richard’s concerns about data security and the development of a ‘surveillance society’.
Some studies involve giving a range of different types of sample. We talked to several people involved in a biobank for Motor Neurone Disease. None of them had any concerns about giving blood samples, but two people were worried about giving spinal fluid samples through a lumbar puncture (a needle into the spine). One previously had a negative experience during his first lumbar puncture. The other had never had one, but had seen them performed on TV programmes and imagined they would cause a lot of discomfort.
Several people discussed the types of project in which they would not participate (see also ‘Attitudes to other types of research
’). Concern about invasive procedures or pain was a common issue. Gareth, who regularly takes part in diabetes studies as a healthy volunteer, decided not to take part in one that would have involved being injected with insulin.
Most people could see the value of donating samples to biobanks for research, even if they chose not to take part. However, Richard felt unsure of initiatives like the UK Biobank because they do not have “a specific aim”. He contrasted this with another study which he did take part in.
While some biobanking projects are small and do not involve many participants, others like the UK Biobank can be conducted on a large scale and can involve thousands of participants. Being invited into a large biobank can make people think that they as one individual among thousands may not be missed if they decline to take part. As Richard said, “The cost of one individual in what is actually a population study would be minuscule”. Despite declining to take part, most people saw the importance of biobanking for medical research, and said they would not discourage others from participating.