Biobanking refers to the process by which samples of bodily fluid or tissue are collected for research use to improve our understanding of health and disease (see ‘Types of biobanking sample ’
). Other information, such as height, weight and questions about things that may have a bearing on health (e.g. family history and lifestyle) may also be recorded at the same time, to provide the context for the samples. Often the samples are kept indefinitely or for several years, depending on the study, so that long term future research can be carried out. The researchers may track the health of the participants by looking at their past and future medical records, but only if people have given them permission to.
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.
Publication date: December 2011 Review date: December 2013
Taking part in biobanking involves donating samples of blood, tissue, fat and other body fluids which are used in research to improve our understanding of health and disease. Samples may be stored for long periods of time, depending on the study, so that long term future research can be carried out. This new Healthtalkonline section on Experiences of Biobanking Projects includes interviews with 21 people from different backgrounds discussing what it is like to be involved in biobanking, the reasons they took part, the information they needed and the concerns they had. There are accounts from healthy volunteers, pregnant women, people with health conditions, and those who chose not to take part. Browse through the ‘Full list of topics’ on the left side of the screen or select from the key topics below.