GeneWatch UK welcomed today's call for a debate about whether people should have their own genomes sequenced and stored in their electronic medical records to try to predict their risk of future diseases (1). The idea is part of a marketing strategy called 'early health', which involves a massive expansion in the market for medicines, supplements, functional foods and other health products, based on people's genetic make-up and other information that will be stored in their electronic medical records (2).
"Creating a genetic database to market products to healthy people will divert important NHS resources away from treating people who are sick. People's privacy will also be destroyed as every individual and their relatives could be tracked using their DNA", said Dr Helen Wallace, GeneWatch UK's Director.
A hidden policy commitment to this idea led to the massive 12 billion pound Government investment in the system of centralised electronic medical records known as the 'Spine' (2). Medical records in London are due to be uploaded to the database this month, in an attempt to fast-track the system so it cannot be dismantled by a future Conservative Government.
"British taxpayers are already subsidising the transformation of the NHS to create a Brave New World where everyone is given medication before they become ill", said Dr Wallace. "For most diseases in most people, calculated genetic risks will be largely meaningless, but access to personal genetic information by commercial companies will allow a massive marketing scam to be pushed by vested interests".
A national genetic database which included everybody's genetic make-up in their electronic medical records would be built as a public-private partnership and data would be likely to be shared widely. The idea that genetic screening could be used to 'predict and prevent' common diseases has been widely promoted by the Government, following Blair and Clinton's joint announcement of the completion of the Human Genome Project in June 2000. The so-called 'biotech barons' - major donors to New Labour - were amongst the advocates of a 'genetic revolution' in healthcare, in which everyone would have their genome sequenced in the NHS (2). Companies with an interest in personalised marketing based on people's health information and genetic make-up include Nestle, Proctor & Gamble, General Electric, and Google (with its associated gene testing company 23andMe) (2,3). General Electric's subsidiary, GE Healthcare, until recently co-chaired the Government's Ministerial Medical Technologies Strategy Group, which backs the gene screening plan (2). A national genetic database could also be accessed by the Government or police to track individuals or their relatives.
2010 marks the tenth anniversary of the announcement in June 2000 of the draft sequence of the human genome by Clinton and Blair, at a press conference organised by the Wellcome Trust. The Wellcome Trust has been the lead organisation lobbying for this approach to health since 2000 and its Director Professor Sir Mark Walport was one of the architects of a controversial data-sharing plan dropped by ministers in 2009 following massive public opposition (4). The UK Biobank research project was funded by the Wellcome Trust and Medical Research Council (MRC) as a pilot project for a national DNA database linked to electronic medical records, in an attempt to win the race to commercialise the human genome.
In a recent NHS consultation, the Wellcome Trust Sanger Centre "encouraged the [NHS] Care Records Service to prepare for the integration of significant amounts of genetic and genomic information into patient records" (5). However, members of the public expressed serious concerns that their personal medical and genetic data might be accessed by researchers without their consent.
Since the completion of the Human Genome Project, evidence has grown that most diseases in most people are not predictable from people's genes: a criticism that many scientists made before the project started (6). Rare inherited forms of many diseases, including cancers and obesity, do exist, so it is important that gene tests are available to the minority of people from high-risk families. Tests of the genetic damage that arises when a person develops cancer can also be useful for their care, but this can only be tested once the cancer has developed. Technology assessments of most tests claiming to link people's genetic make-up with diseases or drug response have found that the genetic effects are too small to be useful in improving health outcomes.
GeneWatch also questioned whether people would actually believe the genetic health predictions they are likely to be given. Genetic tests are not regulated and many companies have made misleading and contradictory interpretations of people's genetic risk (7). Attempts to market genetic risk predictions have also not been commercially successful. The pioneering gene testing company DeCode Genetics, set up to exploit genetic information linked to medical records in Iceland, filed for bankruptcy in November 2009 (8). US gene testing company 23andMe also announced that it would be selling its health-related gene tests separately from its ancestry tests, which are much more popular (9).
"Some gene tests are useful in some circumstances", said Dr Wallace. "But this does not justify wasting billions on screening everybody's genome, damaging the health service with unnecessary costs and misleading health predictions, and destroying people's right to privacy".
Under current legislation, the police could access genetic information held in the NHS and use it to track individuals or their relatives, provided they could convince a court that this is in the public interest. Blanket access by the police to search a genetic database built in the NHS could be given if the law is changed in future (4). There is currently a voluntary moratorium on the use of most genetic test results by the insurance industry, but there is no legislation in Britain to prevent insurers or employers using genetic test results in future to refuse someone insurance or a job.
For further information contact:
Dr Helen Wallace, Office: 01298-24300, Mobile: 07903-311584.
Notes for editors:
(1) The call was made by Professor Sir Mark Walport, Director of the Wellcome Trust.
(2) GeneWatch UK Briefing, Is 'early health' good health? April 2009. Available on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Data_mining_brief_fin_3.doc
(3) PriceWaterhouseCooper, November 2009. Press release and link to the report available on: http://www.prnewswire.com/news-releases/232-billion-personalized-medicine-market-to-grow-11-percent-annually-says-pricewaterhousecoopers-78751072.html
(4) The Government data-sharing proposals hidden in Clause 152 of the Coroners and Justice Bill would have allowed medical and genetic data to be accessed without consent. See: http://www.genewatch.org/sub-563487
The full history (large file) is on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/UK_Biobank_fin_1.pdf
A shorter briefing is on: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/MPs_brief_CJB_fin_1.pdf
(5) The report of the NHS Connecting for Health consultation on the additional uses of patient data was published on 30th November on: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_109343.pdf
(6) Examples of genes and common diseases are available in: http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Examples_of_genes_and_common_diseases.doc
Or see: Wallace HM (2009) Genetic screening for susceptibility to disease. In: Encyclopedia of Life Sciences. John Wiley & Sons Ltd., Chichester. September 2009. On: http://mrw.interscience.wiley.com/emrw/9780470015902/els/article/a0021790/current/abstract?hd=All,wallace
(7) See, for example:
Sunday Times, 7th September 2008:
Reuters, 7th October 2009: http://www.reuters.com/article/marketsNews/idUSN0749622120091007
The Scientific Advisory Committee on Nutrition issued a warning about gene tests linked with dietary advice in 2008:
(8) See, for example, the Independent: http://www.independent.co.uk/life-style/health-and-families/health-news/firm-that-led-the-way-in-dna-testing-goes-bust-1822413.html
(9) 23andMe is funded by Google and was co-founded by the wife of Google founder Sergei Brin. See 23andMe PR: http://spittoon.23andme.com/2009/11/13/get-just-the-information-you-want-23andme-to-offer-separate-health-and-ancestry-editions