Civil liberties groups have reacted very poorly to a proposed new NHS genetic profiling scheme. NHS plans for a £100m DNA “data infrastructure” of certain NHS patients to aid medical research have drawn sharp protests from critics, concerned about the privacy implications of such a system.
Despite specifically stating the database would only contain anonymised data – though this exception can be broken “when it is used for an individualâ€²s own care” – and that “the privacy and confidentiality of NHS patients will be paramount” in its use, the news still generated headlines about security perils.
Exploiting highly sensitive patient data
One organisation, for example, GeneWatch UK, was extensively quoted to the effect the plan “amounts to building a DNA database in the NHS by stealth,” while others accused the government of planning to exploit highly sensitive patient data by selling it to pharmaceutical researchers for commercial exploitation.
The idea, in any case, is to pluck out details of 100,000 or so patients so as to build an information structure to allow probes into their genetic details to get a better handle on key problems like cancer formation. The data will consist of the DNA of NHS patients from England, sequenced over three to five years and then analysed in an attempt (to quote the Prime Minister, David Cameron) to “unlock the power of DNA data”.
“This new plan will mean we are the first country in the world to use DNA codes in the mainstream of the health service,” he predicted.
The use of genetics in patients
“Weâ€²re now getting to the point where the use of genetics in patients can actually help us deliver medicines and understand cancer much better, and to understand a range of diseases in a much more precise way,” Sir John Bell, professor of medical sciences at Oxford University and the governmentâ€²s adviser on genetics, went on to tell the BBC.
Clearly, as genomic sequencing offers so many potential benefits to research, the idea could have great potential. But it also has the potential to cause yet more strains between the Tories and their current political partners, the Liberal Democrats.
When the Coalition was formed 2010, one of the first things the Lib Dems insisted on was the dismantling of various (as they saw them) ‘Big Brotherâ€² databases, such as the National Identity register and the ContactPoint database, as well as the scrapping of the ID card scheme. Could security concerns over this new form of DNA register also become as contentious a proposition inside the Cabinet?