GeneWatch PR: Response to UK Biobank recruitment

Commenting on today's announcement by the Wellcome Trust that the genetic research project UK Biobank has recruited nearly half a million people to take part, Dr Helen Wallace, GeneWatch UK's Director said:


"UK Biobank was set up as a pilot project for a vast database of everybody's electronic medical records linked to their DNA. It is a legacy of Tony Blair and the claims he made that we would all have our genomes sequenced to 'predict and prevent' disease. Commercial interests want to use the marketing of fear to sell more drugs and other products to healthy people who are supposed to be at high genetic risk. This science fantasy is bad for health: genes are poor predictors of most diseases in most people and many people will be treated for diseases they're not going to get. A database of people's medical records linked to their DNA would become the holy grail of marketing and also allow the Government or police to track every individual or their relatives". 


Tony Blair and Bill Clinton announced the completion of the human genome on 26th June 2000. In 2002 Blair gave a speech to the Royal Society claiming that in future people's diseases would be predicted from their genes. In 2003, Blair approved the expensive central database of electronic medical records known as the 'Spine' and the Government's White Paper on genetics in the NHS endorsed UK Biobank and proposed sequencing the DNA of every baby at birth, using the blood spots that are currently collected for medical tests.


The plans were an attempt to copy the biobank built by DeCode Genetics in Iceland and to win the race to commercialise the human genome. DeCode filed for bankruptcy in 2008 and genes linked to common diseases have proved to be either very rare or have very small effects. The US company 23andMe, which sells gene tests online and is funded by Google, is also a commercial failure, having sold only about 30,000 tests.


GeneWatch UK is calling for:


  1. The Government plan to build a vast database of everyone's electronic medical records linked to DNA to be abandoned. This would mean cancelling the NHS 'Spine', and abandoning proposals to integrate genome sequences into people's medical records, except in the limited circumstances where this is of benefit to heath.
  2. A review of the value for money of UK Biobank in the light of evidence that genes are poor predictors of common diseases.
  3. UK Biobank's long-awaited 'Access Policy' to be published for consultation, so that people taking part know who is using their data: what it is being used for; and whether they will be identifiable.


For further information contact:

Dr Helen Wallace, Mob: 07903-311584.

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