GeneWatch UK today warned against plans to funnel a billion pounds of public money into a new biotech economy, based on exploiting data in people's electronic medical records, linked to their DNA. A new GeneWatch briefing (1) highlights the dangers of the plan, which is being advocated by science minister Lord Drayson and considered in the lead-up to this week's budget, despite opposition from the Treasury.
"The idea of genetic 'prediction and prevention' of disease is a science fantasy promoted by a sea of vested interests", said Dr Wallace. "If Drayson's budget is approved, the biggest marketing scam in history will begin in the NHS, at taxpayers' expense".
The briefing highlights the scientific evidence that genetic 'prediction and prevention' of disease will bring no benefit to health. The aim of the companies seeking access to health data is to expand the personalised marketing of healthcare products and services - including supplements, medicines and skin creams - to healthy people. 95% of the population is expected to be identified as 'genetically susceptible' to at least one disease.
Google - which funds the gene testing company 23andMe, run by Google-founder Sergei Brin's wife - has been in discussions with the Department of Health about access to genetic information from biological samples stored in the NHS, linked with medical information held in people's health records.
"Drayson wants to recreate the paradise for charlatans and speculators that was the biotech bubble of the 1990s. To do so he wants to sell off the entire population's electronic medical records, linked to their DNA," said Dr Helen Wallace. "This plan will devastate the NHS and bring no benefit to health. Privacy will be wiped out forever in the name of personalised marketing".
The Government has long promoted the idea of a new 'knowledge-based economy', based on biotech and information technology (IT). Its IT policies have come under fire amid concerns about privacy and the waste of billions of pounds on building a 'database state' (2).
GeneWatch UK has documented how the idea of exploiting electronic medical records linked to DNA underpinned the Government's decision to build the central NHS database known as the 'Spine', at a cost of over 12 billion pounds (3). The secret project to build a genetic database in the NHS has been continually delayed but Drayson is seeking to revive it, amid speculation that it will be feasible to sequence every baby's whole genome within five years.
The data-sharing legislation that would have allowed this to happen without consent was abandoned by Jack Straw in March, following massive public opposition (4). But the Government still intends to use Connecting for Health's 'Secondary Uses Service' as a means to share genetic and health data stored in the NHS with commercial companies. It has recently announced that people will not be able to withdraw their information once it has been uploaded to the NHS database.
For further information contact:
Dr Helen Wallace. Office: 01298-24300; Mobile: 07903-311584.
Notes for Editors:
(1) GeneWatch UK Briefing: Is 'early' health good health? The implications of genomic data-mining in the NHS. 20th April 2009. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Data_mining_brief_fin.doc
(2) The Rowntree Database State report. March 2009. Available on: http://www.jrrt.org.uk/uploads/Database%20State.pdf
(3) The full history is available in a GeneWatch UK report published in January. Available on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/UK_Biobank_fin_1.pdf
(4) More information is available on: http://www.genewatch.org/sub-563487