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• Medical research >> Biobanking >> What is biobanking and why is it important? >> What is biobanking and why is it important?

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. 

• Medical research >> Biobanking >> Deciding not to take part >> Deciding not to take part

Deciding not to take part

• Medical research >> Biobanking >> Information and questions >> Information and questions

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.

• Medical research >> Biobanking >> Ethical issues & future use of samples >> Ethical issues & future use of samples

Ethical issues & future use of samples

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• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Ian - Interview 16 >> Ian hopes no member of his family will develop MND in the future, but is happy knowing his contribution to research might help them or others. He is n

Ian was diagnosed with Motor Neurone Disease just over two years ago, in 2008. He has taken part in several research studies, including a biobank study which aims to improve the diagnosis and understanding of MND.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Tony - Interview 20 >> Tony thinks it’s sensible to track his future health records against his biobanking data but would be worried if it became identifiable.

Tony and his partner recently took part in a biobanking study, which involved donating samples of urine and blood for future use.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Gill - Interview 01 >> Although Gill herself took part in the UK Biobank her husband decided not to. He feels the government already holds too much information about us.

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Gill - Interview 01 >> It is important to Gill that her samples are treated respectfully and securely stored, and that her confidentiality is maintained. She feels the Human

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Gill - Interview 01 >> Gill feels informed consent is an essential principle, and is pleased that procedures have improved hugely since the Alder Hey enquiry.

When Gill had breast cancer, she gave consent for a tumour sample to be kept for research, and gave an extra blood sample for blood marker assays. She has also taken part in the UK Biobank study.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Richard - Interview 03 >> Richard did not want to take part in the UK Biobank because it was not clear how the data would be used. He worried it could be misused and was also c

Richard was asked to take part in the UK Biobank study and decided not to. He has taken part in other medical research in the past.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Richard - Interview 03 >> Richard’s reasons for not taking part were mainly a matter of principle that the government should not interfere in our lives. His wife took part but

Richard was asked to take part in the UK Biobank study and decided not to. He has taken part in other medical research in the past.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Julie - Interview 15 >> Confidentiality is important to Julie. She would be worried if her data fell into the wrong hands but she trusted the biobank to protect her anonymity

Julie has taken part in several research studies, including donating blood and urine samples to a local project to improve identification and treatment of women with pre-eclampsia in pregnancy. She also took part in the UK National Biobank study.

• Medical research >> Biobanking >> Healthy volunteers & pregnancy >> Claire - Interview 06 >> Claire was honoured to take part in the UK Biobank. She says its aim is to find out about factors that affect health.

Claire was invited to take part in the UK Biobank, and was happy to take part. She is very interested in supporting medical research.

• Medical research >> Biobanking >> People with conditions (cancer, MND, hepatitis C) >> Colin - Interview 18 >> Colin thinks insurance companies would be interested in the data but he is confident biobanks have good governance in place to ensure anonymity.

Colin was diagnosed with Hepatitis C in his early twenties. He has taken part in several medical research projects, including currently one which involves giving blood samples to be stored for research. He has also had epilepsy since he was a teenager.

• Condition
• Medical research >> Biobanking >> Biobanking

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.