On this page you will find some basic information about Biobanks. Please read our briefings and reports for more detailed information.
You may also like to look at our timeline for Biobank UK.
What is a biobank?
Biobanks contain blood or cell samples from large numbers of people. Genetic information from each sample is linked to the individual's medical history and lifestyle data. There are already many small biobanks in the UK and there are plans for a national biobank called "UK Biobank". This would involve samples from 500,000 people and might be expanded later to include almost the whole UK population.
UK Biobank would be used to look at how genes and the environment interact to cause illnesses like heart disease and cancer. There are great hopes that new medical treatments and cures could be found but there are also dangers with this type of research.
Questions to ask before you give your sample to a biobank
- What research is going to be carried out using my sample?
- What are the benefits and dangers of this research?
- Will my sample ever be used for research I don't agree with?
- Will any of my genes be patented and will I be informed about it?
- Can I change my mind?
What are the dangers?
Biobank research is likely to lead to new genetic tests to predict how likely you are to get illnesses such as cancer or heart disease. Other tests might even try to predict your behaviour or intelligence. However, like all predictions, the conclusions drawn could be completely wrong and the results could also be misused.
There is no law to stop employers or insurers from using genetic tests to exclude people with the 'wrong genes' from jobs or insurance policies. This could lead to the creation of a 'genetic underclass'.
Biobank research is expensive and might not be the best way to improve health. There is a danger that preventable causes of ill health- such as poor diet, smoking and pollution - will be ignored.
Biobanks could be used to try to find links between genes and criminality, beauty or intelligence. This could be used to support ideas of genetic discrimination or of 'designer babies', created by selecting embryos which had the 'right genes'. Your data might be used for this kind of research whether you agree with it or not.
At the moment, it is unclear who will have access to your genetic information or when this can be disclosed to third parties such as relatives, the courts or the police.
Poor quality data
Many scientists are concerned that the information in the biobank will be inaccurate and incomplete. Its usefulness to medical research is therefore questionable and it could lead to spurious links being made between genes and diseases.
If commercial companies are given access to the biobank, the genetic information in it could be patented. This means that the patent owner can charge other researchers for using genes it has patented. This hinders the development of new medicines by increasing costs and restricting the exchange of scientific information.
What needs to change?
GeneWatch believes the proposed UK national biobank should be shelved until more safeguards are in place:
- new laws to stop insurers and employers using genetic test results;
- an end to the patenting of genes;
- clear rules about who owns your sample, who can have access to it, and what you are agreeing to when you give your sample;
- the UK Government should sign and ratify the European Convention on Human Rights and Biomedicine, which prohibits genetic discrimination. >read more
GeneWatch also believes that people should have a say in setting health research priorities: they should not be driven by commercial interests and what is scientifically fashionable. Read more on the research agendas and patenting section of our website
11th January 2006
- Press Releases
- GeneWatch PR: Response to UK Biobank recruitment 24th April 2010
- GeneWatch PR: Response to UK Biobank recruitment drive 11th September 2007
- GeneWatch PR: UK Biobank gets go-ahead: GeneWatch UK response 21st August 2006
- GeneWatch PR: UK Biobank based on false assumptions and a waste of public money, says GeneWatch 15th March 2006
- GeneWatch PR: Main ethical questions about genetic sampling sidelined in biotech industry's favour: GeneWatch UK response to UK Biobank "Ethics and Governance Framework" 24th September 2003
- GeneWatch PR: Parliament finally talks about Biobank UK 2nd July 2002
- GeneWatch PR: GeneWatch UK challenges the MRC, Wellcome Trust and Department of Health to allow an independent scientific peer review of Biobank UK 22nd April 2002
- GeneWatch PR: Doctors warned to press for safeguards before collecting patients' genes 14th January 2002
- Bioscience for Life? 6th April 2010
- History of the proposal for data-sharing without consent 26th January 2009
- Summary & Conclusions: History of proposal for data-sharing without consent 26th January 2009
- Giving Your Genes to Biobank UK: Questions to Ask 1st December 2001
- Articles and other external links
Scientific paper by GeneWatch's HM Wallace
This scientific paper looks at how data from twins and families is analysed. It concludes that the usual method is likely to exaggerate the importance of genetic differences in common diseases such as cancer. Breast cancer, for example, could often run in families because family members are exposed to the same environmental or lifestyle factors, rather than because relatives share some of their genes. If so, expensive research studies may be looking for "susceptibility genes" which do not exist or will be impossible to find.
- The Guardian: Blood, sweat and tears (18th April 2006)
- The Guardian: Critics' U-turn (15th March 2006)
- The Observer: Half a million to join gene bank for life
- The Guardian: 500,000 people, a span of decades - and a waste of time and money?
- New Scientist: One million people, one medical gamble
The development of UK Biobank: Excluding scientific controversy from ethical debate
Abstract of an article by GeneWatch's Helen Wallace in the journal Critical Public Health. Please contact us if you would like a reprint of the article.
UK Biobank: peer reviewers' comments
In May 2005, the Medical Research Council (MRC) finally published the peer reviewers' comments on the biobank's 2002 scientific protocol, following a Freedom of Information (FOI) request by GeneWatch UK. Many of the reviewers questioned the statistical basis of the project.
- The Telegraph: 62m pound Biobank may not be worth it
- BBC Online: Will Biobank pay off?
- OpenDemocracy: A UK Biobank: Good for Public Health? 24th July 2003
- GenomeBiology: Sobriety amid the celebration
- Genome Biology: Biobank debate heats up
- Genome Biology: MRC under attack
Science and Technology Committee 2003 comments on UK Biobank
The House of Commons Science and Technology Committee questioned the Medical Research Council about UK Biobank and criticised the project as "politically driven". The Committee recommended that the peer reviewers' comments should be published anonymously "to build confidence that the project is fully justified and supported by the scientific community".
- The Telegraph: DNA bank is a big gamble, says expert
- Scientific paper by GeneWatch's HM Wallace
- Consultation responses