Genes and the NHS
Should the NHS be turned into a vast genetic database, with people's electronic medical records linked to stored samples of their DNA and personal genetic sequences (including perhaps a person's whole genome) stored in medical records?
When the New Labour government came to power in 1997 it was funded by a small group of individuals known as the 'biotech barons' because they had invested in biotechnology. The government believed it could modernise the economy by taking the advice of the biotech barons and others and building a vast genetic database in the NHS, linking people's health records to their DNA. In this way Britain could lead the race to commercialise the Human Genome Project and the health data stored in the NHS could become Britain's 'Unique Selling Point' in a new 'knowledge-based economy'.
To implement this plan, the Government established a public-private partnership with the Wellcome Trust, a UK charity which was one of the leading funders of the Human Genome Project. Following lobbing from Sir George Poste and the House of Lords Science and Technology Committee, Tony Blair authorised the creation of the central database of medical records known as the Spine: replacing the original decentralised system (estimated to cost 1 billion pounds) with a vast NHS IT project, currently estimated to cost about 12 billion. The UK Biobank was set up as a pilot project for this vast database and a proposal was even made to sequence the DNA of every baby at birth (using the babies' blood spots taken for medical tests but stored in vast numbers by some hospitals).
In 2008, Gordon Brown became impatient with the delays in implementing this idea and commissioned a report on data-sharing written by Mark Walport of the Wellcome Trust. This led to new data-sharing legislation which would have allowed DNA collected in the NHS and data stored in electronic medical records to be shared with commercial companies without consent. The plan was quicky dropped following a public outcry, but enthusiasts for this idea, including the Wellcome Trust, the Royal Society, the Academy of Medical Sciences and the Human Genome Strategy Group (both led by Professor Sir John Bell) continued to lobby for new data-sharing proposals.
In 2011, the Coalition government, elected in May 2010, backed similar proposals made by the same small circle of advisors. You can read about the 2011 data-sharing proposals here.
- Press releases
- GeneWatch reports
- External links
- House of Lords Science and Technology Committee, Human Genetic Databases: Challenges and Opportunities, 4th Report, Session 2000-01.
Prime Minister Tony Blair: Speech to the Royal Society (23rd May 2002)
Blair claims that doctors will routinely sequence people's genomes in the future to predict and prevent diseases years in advance of any symptoms. He states: "We have a unique resource in this regard in the national health service. There are crucial issues of privacy of genetic information that we need to deal with. But our national, public system will enable us to gather the comprehensive data necessary to predict the likelihood of various diseases - and then make choices to help prevent them".
Gilham and Rowland: Predictive medicine: Potential benefits from the integration of diagnostics and pharmaceuticals (14th June 2001)
A 2001 paper by GlaxoSmithKline managers, published in the Journal of Medical Marketing, predicts a massive expansion in the drug market as a result of predictive genetic testing.
Genome Valley: the economic potential and strategic importance of biotechnology in the UK (1999)
The DTI's 1999 Genome Valley report, developed with input from the biotech, food and pharmaceutical industries, supports the argument that NHS data should be made available to industry to research genetic predispositions to diseases.
House of Lords Science and Technology Committee: Meeting with health and science ministers, 2nd Report, Session 1999-2000.
Poste proposes his idea for a vast genetic database in the NHS to the House of Lords Science and Technology Committee when they visit SmithKline Beecham in May 1999 and provides written evidence to the Committee in November.
Robin Fears and George Poste: Building Population Genetics Resources Using the U.K. NHS (9th April 1999)
George Poste of SmithKline Beecham begins lobbying for a UK population-wide national database of electronic medical records linked to DNA, to be set up as a public private partnership in the NHS, arguing that "the NHS is probably the largest single source of medical information and well-characterized biological samples in Europe".
- Poste G, Fears R. Joining up for the genome. Times Higher Education Supplement (19th February 1999)
- Press articles
- Channel 4: DNA cancer database plan prompts 'major concerns' (10th December 2012)
Computer Weekly: NpfIT went ahead after prime-minister had 10 minute briefing (1st November 2007)
Report of Blair's 18th February 2002 sofa meeting, when he signed off on the NHS National Programme for IT (NPfIT).
Computer Weekly: Who was at the Downing Street NPfIT Meeting? (17th February 2008)
Report of who attended Blair's 18th February 2002 sofa meeting, when he signed off on the NHS National Programme for IT (NPfIT).
- GeneWatch briefings
- History of the proposal for data-sharing without consent 26th January 2009