Biobanking

Being invited or volunteering to donate

Biobanking relies on the participation of healthy volunteers as well as people who have a particular condition. Taking part often involves giving samples of blood, urine, saliva or tissue. These samples are then stored and used to create a better understanding of health and illness, sometimes by tracking the participants’ medical records over long periods of time. One woman said she initially became involved in biobanking “between ten and fourteen years ago”.
 
We asked people how they came to be involved. The most common way people found out about biobank projects was by getting a letter in the post inviting them to take part, sometimes sent by their own GP and sometimes by the project staff.
Generally, the people invited by post reported that the information they received was detailed and explained thoroughly what would be involved, although some wanted further information, whilst others did not feel they needed to read it in detail. (See also ‘Information and question about biobanking’).
People were not always sure why they had been invited. Some thought it might have been because they were blood donors and others thought it could be something to do with the GP practice they attended. 
In fact the UK Biobank, a national study of half a million participants, invites people directly by letter, having obtained permission and contact details from the NHS to invite people in specific areas and age groups. Other biobanks may use a similar approach at local level to get in touch with people. Researchers will not pass on your contact details to other research projects unless you have given permission. Biobanks may ask you if any of your family members are willing to take part too.
 
Some of those who volunteered said they saw posters advertising biobanking projects at hospital. Others said they looked for studies they could participate in and asked hospital staff to inform them of any. 
Some people told us they found out by word of mouth, especially if they or someone they knew worked in research. For instance, Tony, whose partner works as a nurse, found out about the study from her. 
In addition to healthy volunteers, people with long-term and life-threatening illnesses are important participants in biobanking. The people we spoke to in this group explained that they had either volunteered or been invited to take part because of their condition. Sometimes other family members were also invited. 
It is important to remember that even if you are invited to take part in biobanking, you have a choice whether to say yes. Some people who were invited decided not to take part. (Please see ‘Deciding not to take part in biobanking’).

Last reviewed February 2016.

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