Jamie Doward writes in The Observer:
Private firms will soon be able to buy people’s medical and genetic data without their consent and, in certain cases, acquire personal information that might enable them to identify individuals.
The revelation, which contradicts government claims that such material would be completely anonymous, has raised fears that pharmaceutical firms and insurance companies will be able to determine the identities of people susceptible to particular diseases. It has prompted claims that fundamental changes to the use of NHS patient data are being introduced without adequate public debate or regulatory oversight.
The government is keen for Britain to be at the forefront of the genetic revolution, a potential multibillion-pound industry. Last year David Cameron launched a Â£100m scheme to map the genomes of up to 100,000 people, saying it would help to save lives by delivering new treatments. The move was seen as the first step in the construction of a national human genome database.
Under the scheme, firms would be able to access the information at a cost, but ministers insist that all data will be strictly anonymous. However, material released under the Freedom of Information Act reveals that firms can invoke an appeal process to demand “patient-identifiable data”, such as age and postcode.
“Without a semblance of transparency, a national genetic database, connected to personal medical records and made available to the private sector, has been set up. Privacy laws have been redefined and our own genomic information is being commercialised,” said Edward Hockings, a bioethicist from the pressure group Ethics and Genetics, who made the FOI requests.
Relevant FOI disclosures can be read on the Ethics and Genetics web site.