GeneWatch UK today warned that Cameron's announcement for a genetic research centre in the Olympic Park would mean people's genomes being sequenced without their consent in the NHS. Personal medical data and genetic information would be used to build a DNA database stored in electronic medical records, with the aid of private companies.
The plan for a universal DNA database in the NHS is being promoted by the medical charity the Wellcome Trust, which aims to sequence the entire genomes of everybody in the NHS (1) and by the Human Genome Strategy Group (2). Each person's whole genome would be compared to the reference genome stored at the Wellcome Trust Sanger Centre and stored in their electronic medical records. The data would then be made available to private companies to data-mine and attempt to find statistical correlations between genes and physical characteristics or diseases.
"A DNA database of the entire population would allow every individual to be tracked using their DNA and their relatives to be identified" said Dr Helen Wallace, Director of GeneWatch UK, "Allowing people's genomes to be sequenced and linked to personal data without consent is a dangerous infringement on everybody's rights. The Prime Minister should not be using the Olympics as a cover for selling people's medical records and personal genetic data to the highest bidder".
The idea of predicting who would be genetically susceptible to common diseases or adverse drug reactions was promoted by scientists in the lead up to the Human Genome Project, but genetic predictions have turned out to be poor in most cases because multiple genes play a small and complicated role in most diseases and drug responses. A planned medical DNA database in Iceland was never completed as accessing medical data without consent was ruled unconstitutional, and the company DeCode which had access to the data was later declared bankrupt, although it continues to trade as a private company (3).
Drug companies such as GlaxoSmithKline, internet companies such as Google, and private healthcare companies such as GE Healthcare have been leading advocates of genetic prediction of disease because it would allow them to expand the market for drugs and other healthcare products to healthy people who believe they are at risk of becoming ill in future.
"Most diseases in most people are not predictable from people's genes" said Dr Wallace "This plan is not a plan for health but for personalised marketing. Once people genomes have been sequenced they will be asked to opt-in to receiving misleading personal genetic risk assessments and be deluged with advice and advertising to buy medicines, supplements and other healthcare products that they do not need. This is not a plan for growth, it is a plan to con the British public and destroy the NHS".
Dr Helen Wallace, Office: 01298-24300; Mobile: 07903-311584
Notes for Editors:
(1) According to a presentation by Tim Hubbard of the Wellcome Trust Sanger Institute, the Institute (based south of Cambridge at its "Genome Campus" at Hinxton) will sequence the DNA contained in the samples, producing a string of letters representing the genetic code. The data will be stored on the internet (known as the cloud) by the European Bioinformatics Institute (EBI) based at the same site, as part of a project called ELIXIR. The amount of data to be stored will be reduced by storing the differences between each genome and the so-called "reference genome", rather than the whole genome itself. Up to 60 million of these so called "variant files" will be stored on the internet (600 terabytes of data): one for every person in the population (note: it is unclear whether people in Scotland are intended to be included in the plan). The variant file will also be linked as an attachment to each individual's electronic health record, containing data about their illnesses and care collected in the NHS. Hubbard T (2012) Genomics - current opportunities and threats. Nuffield Council on Bioethics. Workshop on genomics, health records, database linkage and privacy. 22nd February 2012. Academy of Medical Sciences, London. http://www.nuffieldbioethics.org/sites/default/files/files/Hubbard_T%282012%29_Genomics%20_current_opportunities_and_threats.pdf
(2) National DNA database needed for personalised medicine drive. The Telegraph. 25th January 2012. http://www.telegraph.co.uk/health/healthnews/9038712/National-DNA-database-needed-for-personalised-medicine-drive.html
(3) Firm that led the way in DNA testing goes bust. The Independent. 18th November 2009.