Yesterday prime minister David Cameron announced that the anti-doping center currently being used for drug tests on the athletes participating in the London Games will become a ‘phenome centre’ from October of this year. Phenomes are to physiology what genomes are to genetics; and the intention is to provide a research centre that could lead to the development of better targeted drugs.
"When the games close,” said Cameron, “all this incredible equipment and expertise will be used... for research into biological markers of health and disease," reported Reuters . "This will take advantage of the extraordinary opportunities that lie in combining genetic data with the results of medical tests on tissues and blood. It will allow us to understand the characteristics of disease and how these link into genes and our environment.”
It is this linking of phenomes with genomes (DNA) and research that worries GeneWatch. How can you do serious research without a database to research? One suspicion is that long term plans for a national DNA database explain the failure of the police to abide by coalition promises to remove records from the police DNA database. Big Brother Watch reported earlier this year (based of FoI information) that during the last three years almost a million new DNA records have been added to the police database, including around 165,000 from innocent people – while less than 16,000 have been deleted.
DNA is just about the most personal information any person has. “The details of our care, medication and illnesses are not a ‘knowledge base’ but our the personal information of our families and loved ones,” Big Brother Watch director Nick Pickles told Infosecurity. “Our medical records are not the Government’s to give away, but our information that we should control.”
While the pharmaceutical industry claims that large-scale access to DNA information in the population can lead to the development of new and better-targeted drugs, there is a question over whether such a database, likely to be stored in the cloud and available to researchers around the world, can be stored securely. “Anonymized data is not always as anonymous as it sounds, as has been warned by academics and medical professionals. Once the floodgates are opened it will be a matter of time before data is re-identified and used for other purposes,” said Pickles.
“Cameron's been persuaded that all our medical records should be made available to drug companies for research; names and addresses will be removed, but that won't stop you being re-identified by anyone who knows a bit of context,” explained Ross Anderson, professor of security engineering at Cambridge university to Infosecurity.
Dr Helen Wallace, Director of GeneWatch UK takes it further and suggests it is all basically a massive economic scam. “A DNA database of the entire population would allow every individual to be tracked using their DNA and their relatives to be identified,” she said. "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.”
She suggests that the true purpose of a national DNA database is actually a variant of behavioral advertising. “Most diseases in most people are not predictable from people's genes,” she said. “This plan is not a plan for health but for personalized marketing. Once people’s 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.”
“The next Government Chief Scientist will be Mark Walport of the Wellcome Trust,” said Anderson, “who has long argued that we have a public duty to make our records available for research (this is contrary to ECHR but he will not argue that we should leave the EU as this would convince most people he's a nutter). The Wellcome wants to fund all this genome stuff. It's one big push, by one powerful clique – the medical research establishment – supported by Whitehall which finds the prospect of the death of privacy rather welcome.”
“The Government urgently needs to confirm that these proposals will not create a national database of everyone’s DNA by the back door and legislate to put into law that this must not happen,” added Pickles.