Secret genetic database plans also drove 12bn pound cost of NHS IT fiasco
Bill will allow access to DNA and medical records of whole population by US companies, the EU and the police
In a new 100-page report published today (Monday), GeneWatch UK exposes the history of the plans to centralise electronic medical records in the NHS and its links to a secret proposal for a national DNA database for all (1).
A GeneWatch Parliamentary Briefing documents how the proposals for information-sharing being debated in parliament today (Monday), hidden in the Coroners and Justice Bill, would allow this plan to be implemented via an 'information-sharing order' without any parliamentary oversight (2).
If the proposals are adopted, DNA collected for medical purposes in the newborn screening programme, linked with other medical information, could be handed over to the police or private companies, and shared internationally, without people's knowledge or consent.
"Straw is set to wipe out the personal privacy of everyone in Britain at a single stroke", said GeneWatch UK's Director, Dr Helen Wallace.
A high-level Government commitment to this project also drove the decision to invest billions of pounds in a centralised electronic medical record database for the NHS (the 'Spine'), at an estimated cost of over 12 billion pounds, rather than the original much cheaper proposals for records held locally by doctors.
The GeneWatch report documents a secret plan to transform the NHS, replacing doctors with computerised surveillance and smart cards, based on the discredited idea that scanning everybody's genes would allow common diseases such as heart disease and cancer to be predicted and prevented. The plan for a national genetic database linked to NHS medical records was first proposed by the pharmaceutical industry as a public-private partnership because it would allow them to massively expand the drug market to the whole population. Everyone would be identified as 'genetically susceptible' to something, and could be given medication even if they were not ill.
"The Government has blown billions in a public-private partnership to implement a dangerous science fantasy. The scale of the fiasco is already staggering", said Dr Wallace, "If the full plan goes ahead it could destroy the NHS".
Although more genes linked to conditions such as diabetes and obesity have been discovered recently, they have very small effects and are not useful to decide who needs to change their lifestyle or take medication. However, instead of abandoning the plan for a genetic database, the report reveals how the Government has teamed up with the private healthcare industry and opposed regulation that would require companies to show whether health-claims made for gene tests were true and useful.
The US company GE Healthcare now backs the plan for genetic 'prediction and prevention' of disease, along with continuous healthcare monitoring and surveillance, via a high-level ministerial group set up in 2007, which it co-chairs (3). Public consultation on the implications of this idea, conducted by the Government's Science Horizons project (part-funded by GE Healthcare), brought to the surface many deep-seated concerns, including (4):
- trust in expertise - who can be trusted?;
- concerns about the security, privacy and integrity of personal information (IT- or genetically-based);
- concerns about safeguards against abuse of technologies by authorities or by criminals;
- and fears about loss of the 'human touch' in everyday interactions, for example in relation to health, and in work.
There was a "striking trust deficit" and some people saw expert priorities for research investments as inevitably not the same as those of the average citizen.
The Parliamentary Briefing, also published by GeneWatch today, explains how, if adopted, the information-sharing plans in the new Coroners and Justice Bill would allow information in NHS electronic medical records to be linked with genetic information and shared with private companies, the police, and other countries, without people's knowledge or consent. Sir George Poste, who made the original proposal for the database when working for SmithKline Beecham, later became Bush's bioterrorism advisor.
"Is Britain a nation of guinea-pigs, or are we people who should have a say?", asked Dr Wallace.
For further information, contact:
Helen Wallace, GeneWatch UK. Office: 01298-24300; Mobile: 07903-311584.
Notes for Editors
(1) The history of UK Biobank, electronic medical records, and the proposal for data-sharing without consent. GeneWatch UK report. January 2009.
Summary and Conclusions: www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Summ_Concl.pdf
(2) The Coroners and Justice Bill: A DNA database by stealth? Parliamentary Briefing. GeneWatch UK. January 2009. www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/MPs_brief_CJB_fin.pdf
(3) The Ministerial Medical Technologies Strategy Group (MMTSG): http://www.advisorybodies.doh.gov.uk/hitf/mmtsg.htm
(4) The Science Horizons Project: http://www.sciencehorizons.org.uk/resources/sciencehorizons_deliberative_panel.pdf