A £100 million project which will see DNA information of 100,000 cancer patients mapped out in a database has raised concerns among advocates – with Big Brother Watch declaring it “wholly wrong”.
The plans, outlined by David Cameron, will be worked on over the next five years, and could one day hold the genetic details of every British citizen.
The Prime Minister claimed that this will “push the boundaries” of science and introduce genetic sequencing for the first time by “unlocking the power of DNA data”.
But the UK’s genome plan has also raised concerns that the data could be used to create commercial deals with organisations such as drug companies. There are also fears that people with access to the database could use the genetic codes to identify and track every individual on it, and their relatives.
Cameron’s office has said that the genome sequencing will be entirely voluntary and patients will be able to opt out without affecting their NHS care.
As the Conservative-Lib Dem Coalition has faced criticism that it is in the process of dismantling the NHS to an extent never seen before, Cameron announced the £100 million funding will come from existing NHS budgets. It will initially be spent on training scientists and creating secure systems to handle the information.
Nick Pickles, director of privacy and civil liberties campaign group Big Brother Watch, told TechEye that the NHS should not be treated as a government asset, and assurances on anonymity have not been exemplary.
“Whatever happened to putting patients in charge of their medical information? If private companies want access to our medical records then they should ask,” Pickles said. “It’s wholly wrong for this to be an opt-out scheme when the implications for privacy are so clear.”
Mr Pickles added: “NHS data isn’t a government asset, it’s details of our illnesses, treatments and hugely personal information. Assurances of anonymity have been demonstrated to be hollow in other countries and it’s only a matter of time before insurance companies or marketing companies try to use the data.”
Despite making assurances that the data would be “completely anonymised before it is stored”, Pickles warned that the government must listen to a wide range of voices, “including patient and privacy groups, to prevent policy being developed purely to appease big pharmaceutical companies”.
“It’s not clear whether this policy has fully taken into account the very real privacy concerns sharing large volumes of patient information entails,” Pickles said.