Biobanks

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.

Genetic discrimination

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'.

Genetic thinking

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.

Non-medical research

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.

Confidentiality

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.

Gene patenting

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

Resources

  • Articles and other external links
  • Consultation responses

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