Biobanking

Reasons for wanting to take part - personal benefit

People donate samples and data to biobank projects for a wide range of reasons. They may do it to help others, to aid medical science, to improve understanding and treatment of health and illness, or to gain personal benefits, such as reassurance about their current health or the progress of their condition. In reality, the motivation behind research participation is often a combination of these things. (See also ‘Reasons for taking part' contributing to medical science and helping others’). In this section, we look at how people feel they benefit personally from taking part in biobanking projects. 
 
Many of the people we interviewed had serious medical conditions, such as cancer, hepatitis C and Motor Neurone Disease (MND). Several had volunteered for a range of research projects, including clinical trials as well as biobanking. In clinical trials, new treatments are being tested; even though we do not yet know whether these new treatments will work, participants in clinical trials often feel they may get some direct health benefits from taking part, as well as other advantages such as closer monitoring or better information. (See our website on ‘Clinical Trials’). 
In biobanking projects, by contrast, people are usually not being given a treatment, so it is unlikely there will be any immediate health benefits, and most said they took part mainly to help medical science (see ‘Reasons for taking part: contributing to medical science and helping others’). However, people still identified a range of possible benefits, some of which they had thought about beforehand and some of which they identified with hindsight. In David’s case the analysis of the samples helped with his own care as well as research.
Occasionally people felt contributing samples to a study might help find a cure for their condition in their lifetime (although most thought this was unlikely). 
Being reassured about their health was an important reason why people who were healthy took part in biobanking. In some cases they felt it offered them the opportunity to have a thorough health check, and that if there was anything wrong with them it would be uncovered during the process. Louise described this as a ‘free MOT’. Even though health checks are of course available free from the NHS, she and her partner are keen sports enthusiasts, so they are interested in extra health measurements to monitor their fitness, which sportsmen and women sometimes arrange privately.
Some people said they were concerned for themselves when there was a history of illness or health conditions in their families. These included high cholesterol and heart disease. Getting involved offered them the opportunity to ensure they were in good shape and unaffected by hereditary conditions.
While some people took part having already thought about the benefit of health checks, others described some health benefits they had not expected. This might make people more likely to come back again for further studies even if it was not a reason for taking part in the first place.
Sometimes people with a particular condition felt that participating in biobanking would result in them receiving better care or the most current information about their condition. One person felt they were seen as “more of a person and less of a number” because they took part in medical research. (See also ‘Communication and relationship with staff’). 
However, others felt it made no difference to the care received.
Another personal benefit people with particular conditions felt they gained was having contact with leading health specialists that they might not otherwise have had.
People may also benefit psychologically from taking part. It may allow them to feel they are taking control of their condition, even when it is incurable.
Sometimes people receive some level of payment or ‘compensation’ for taking part in biobanking. This might include a small sum to compensate people for their time. Not all studies offer this, but most pay for the participants’ travel expenses. Some of the healthy volunteers said that they had been given some form of compensation for their participation. However, this was not their main motivation for taking part.
Volunteers identified a range of other benefits from taking part, including finding out more information, and satisfying their personal curiosity and interest in research.
Some people, especially those involved in repeated visits with the same team of staff, talked about really enjoying the time they spent at the clinic. (See ‘Communication and relationship with staff’).
There was also a good feeling of personal satisfaction to be gained from the knowledge that in taking part you are helping other people.
Generally, however, healthy volunteers and people with medical conditions felt personal benefit was not that important as a reason for taking part, compared to helping others. It was something they chose to do, perhaps because they had no real reason not to and there were no real disadvantages for them. (See also ‘Reasons for wanting to take part: helping medical science and other people').


Last reviewed February 2016.

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