Biobanking

Reasons for wanting to take part - helping medical science & other people

The reasons people give for taking part in biobanking vary. They may participate in order to help others, to make a contribution to science or medical research, or to gain personal benefits, such as free health checks or reassurance that they are healthy at present. Often, people’s reasons are a combination of these factors. In this section, we will be discussing people’s desire to contribute to medical science and help other people. (Please see also ‘Reasons for taking part' personal benefit’).
 
Unlike clinical trials, in which new treatments are being tested, in biobanking projects people are usually not being given a treatment which might benefit them directly. Biobanking relies on the contribution of healthy volunteers as well as people who have specific illnesses or health conditions. The people we spoke to who had got involved in biobanking projects recognised the importance of their donations in helping others and contributing to medical research. 
People often said they took part in biobanking because they wanted to contribute to the greater good and to help other patients, even if there was no personal benefit for themselves. This included people who participated as healthy volunteers, such as Gareth above, and those who had a particular condition. 
For some, an important factor in deciding whether to take part was thinking about the future health of members of their own families. 
More generally, they also wanted to help others, saying, “It’s like giving to mankind”. One man said, “You feel that you are contributing to the world, which is a good feeling in itself, and also good could come out of it.” 
Some people described a sense of duty to the wider community and some took part simply because they had been invited to. One person described it as “doing your bit”, but at the same time talked about a sense of personal satisfaction (see ‘Reasons for taking part - personal benefit’) 
People hoped to contribute to scientific progress and to improve health, diagnosis and treatment for future generations, but sometimes also hoped they might benefit too (see also ‘Reasons for taking part - personal benefit’). Sometimes people seek out projects to take part in because they believe it can make a difference in their lives and in the lives of others. For example, when Roland attends appointments about his Motor Neurone Disease, he “always makes a point of asking if there is any research project going on”. 
Some people return to take part in other studies after they have been involved in one. This may be linked to the relationship they develop with the staff, who can be appreciative of their contribution (see also ‘Communication and relationship with staff’). People also said that knowing someone else who had participated in some form of medical research may have influenced their decision to take part.
Some of the people we talked to worked for the NHS or in research jobs (either health-related or other kinds of research) and knew how important it is for volunteers to come forward. Some also expressed a personal interest because of their family history. 
But Louise also noted that some of her NHS colleagues did not always understand her reasons for taking part.
Some of the people we spoke to explained that their decision to take part in biobanking was to repay the care either they or their family had received. There was a sense of general gratitude to the NHS. People took part as a way of acknowledging the dedication of staff (health professionals and medical researchers) and the care they provided. They used it as a way to say thank you to previous generations of patients who have taken part. 
One woman who became pregnant using egg donation and IVF said she donated to the UK Biobank because she wanted to repay “the system” as she had benefited from others’ participation in research.
Many of the people said that taking part was quite easy to do and did not take a long time. They often thought about it in terms of “why not” do it rather than thinking about why they should do it. We asked people whether they felt it was similar to blood donation, which has often been compared to giving a gift*. Whilst some felt this was a good comparison (see for example Gill above), others felt it was overstating the case, because the types of things they were donating, such as tumours, urine or umbilical cord blood, could not be seen as gifts. They simply felt that their donations would have been waste products otherwise. 
*See for example the 1970 book about blood donation by social researcher Richard Titmuss, The Gift Relationship: From Human Blood to Social Policy.

Last reviewed February 2016.

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