Information and questions
Before taking part in any research, people must be given an information sheet telling them what the study is about and exactly what they will be required to do. This should also describe any benefits or disadvantages there might be. People need information to be able to decide whether or not to take part.
There was a mixed reaction among the people we spoke to about the information sheets they had received. Some thought the information was “clear”, “about right” and that there was enough information for them to decide whether to participate or not. However, others felt that the leaflets were quite lengthy, repetitive and that the language used was too technical for ordinary people to understand. A few sought extra help from a family member or friend to understand the information. The information sheet is important as it can encourage or discourage people from taking part.
Some of the people said that they had not read the information sheets they had received, and a few thought the pendulum has swung a bit too far these days towards giving everyone lots of information about everything. Given that biobanking generally involves very little risk or inconvenience, some felt they did not need such lengthy, detailed leaflets, and did not really care how their samples were used. More summarised information might help, but at the same time people recognised that it is difficult to know what each individual will prefer.
Jean argued that everyone should get the same information, but that it should be clear and understandable.
Whilst most people felt they had enough or even too much information, some felt there were things missing or things they did not understand.
A few people felt they had unanswered questions about the secure storage of data, and personal privacy. For example, one man who was a healthy volunteer worried that that donating samples for biobanking might have negative implications for his insurance policies. It was also apparent that some people had misunderstood what they had consented to, for example not realising that their sample might be shared with other research groups or that researchers might have access to their medical records in future (see ‘Ethical issues and future use of samples
As David suggests, being able to ask further questions face to face was important, and most people we talked to felt they had been able to ask for further explanation from the staff. Those who asked questions generally found staff to be informative and good at explaining things, but some were better than others. (See also ‘Communication and relationship with staff
People also had discussions about taking part with their GPs and relatives who were knowledgeable about medicine.
Not everyone felt that they needed to ask many questions. For example, one woman said she was so heavily monitored during her pregnancy that she never felt the need to ask anything. Ruth did not feel she needed to ask anything but knew where she could turn to if she had questions later.
Gill also found the internet a useful additional source of information and commented on how interesting she found the UK Biobank website. Gareth, on the other hand, cautioned that it can be difficult to find trustworthy information through general searching. He said, ‘If I can get the same information from two or three sources then I start to believe it…Websites are full of information but it’s also full of noise.’
Occasionally people did not feel able to ask questions of the staff when they attended for their appointment.
However, Elaine encouraged people not to be afraid to ask and has always found staff willing to respond.