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, 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. Subsequently, the EU's General Data Protection Regulation (GDPR) largely prevented a DNA database being built within the NHS without consent. However, there continue to be proposals to undermine these safeguards.


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