Monday 5th December 2011
GeneWatch UK today warned that plans to share NHS data with private companies could lead to people's DNA being sequenced without their consent and stored in their medical records. This would lead to a vast DNA database built by stealth within the NHS. Every individual and their relatives could be tracked by anyone with access to this database. It would be impossible to keep such data private.
Key lobbyists who have backed the new data-sharing proposals - including Professor John Bell of the Human Genome Strategy Group (HGSG) - have long been advocates of creating a genetic database of the whole UK population without consent within the NHS (1). The HGSG consulted the Human Genetics Commission (HGC), a government advisory body, about plans to sequence people's DNA in the NHS without their knowledge or consent earlier this year (2).
Google is one of the commercial companies with an interest in the plan (1). The company has invested heavily in a gene testing company called 23andMe, run by the wife of one of Google's founders, which sells gene tests online. 23andMe met Cameron's advisor Steve Hilton, who has close links to Google, in 2009 (3). Google has recently invested in a company that plans to use cloud computing to store DNA data (4).
"Every adult and baby with a blood or tissue sample stored in the NHS could end up with details of their genetic make-up stored in a cloud-based DNA database built by stealth within the NHS" said Dr Helen Wallace, Director of GeneWatch UK. "The Prime Minister should come clean about whether sharing people's DNA and genetic information is part of his new plans. Is Google one of the private companies that will be offered access to people private information stored in the NHS? Will DNA and genetic information be shared with them or other companies without people's knowledge or consent?"
A plan to sequence the DNA of everybody in the NHS, creating a vase genetic database in the NHS, was first proposed by SmithKline Beecham (now part of GlaxoSmithKline) in 1999 as a means to expand the drug market to "pre-symptomatic patients". The idea was backed strongly by the New Labour Government, who adopted the 12 billion pounds to create a central database of electronic medical records in the NHS in order to facilitate this vision of the future. Plans to sequence the DNA of every baby and to allow data-sharing in the NHS without consent were dropped following public outcry and criticism by medical professionals (5). However, millions of babies' DNA samples are still stored within the NHS, as is blood and tissue from tests done on adults and children as part of their medical care (6).
Gene tests sold by 23andMe have been widely criticised for their poor predictive value and a rival company DeCode, which tried to establish a DNA database of the whole population of Iceland, has gone bust, amid mounting evidence that genetic differences are poor predictors of most diseases in most people (7). However, commercial interest in the idea persists because people who are convinced that they are genetically susceptible to developing common diseases in the future could become a market for preventive medication and other health and wellness products sold by the private healthcare, food, drug and supplements industries.
"Commercial data-mining of health data will lead to personalised marketing to healthy members of the public of medication and other tests and treatments that they do not need", said Dr Wallace, "Predicting people's risks of diseases in the future, based on their DNA or other information, will massively expand the drug market to people who are not ill but who are frightened that they will be in the future. This would be bad for health, the end of privacy and could bankrupt the NHS."
For further information contact:
Dr Helen Wallace. Office: 01298-24300; Mobile: 07903-311584.
Notes for Editors:
(1) GeneWatch UK (2009). Is 'early health' good health? 20th April 2009. On: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Data_mining_brief_fin_3.doc
(2) HGC response: Gaining consent for genomic studies involving NHS patients. 15th February 2011. http://www.hgc.gov.uk/Client/document.asp?DocId=305&CAtegoryId=4
(3) Nelson F (2009) They wish we all could be Californian: the new Tory plan. The Spectator, 25th February 2009. http://www.spectator.co.uk/the-magazine/features/3388306/they-wish-we-all-could-be-californian-the-new-tory-plan.thtml
(4) DNAnexus Secures $15 Million Funding Led by Google Ventures and TPG Biotech. Business Wire. 12th October 2011. On: http://www.marketwatch.com/story/dnanexus-secures-15-million-funding-led-by-google-ventures-and-tpg-biotech-2011-10-12
(5) More information is available on: http://www.genewatch.org/sub-568491
(6) More information about babies' blood spots is available on: http://www.genewatch.org/sub-568490
(7) The Independent: Firm that led the way in DNA testing goes bust. 18th November 2009. http://www.independent.co.uk/life-style/health-and-families/health-news/firm-that-led-the-way-in-dna-testing-goes-bust-1822413.html ; GeneWatch UK PR: GeneWatch PR: Google's gene test company 23andMe proves its own business is useless. 28th June 2011. On: http://www.genewatch.org/article.shtml?als[cid]=396520&als[itemid]=568743