Private companies may be able to purchase access to medical and genetic data, and possibly to personal data, housed in databases of the UK's National Health Service, the Observer's Jamie Doward reports. Last December, David Cameron announced a £100 million ($160.9 million) plan to sequence 100,000 people to study cancer and other diseases as well as bolster the NHS data infrastructure.
But, this "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," Doward says.
Doward notes that details obtained under the Freedom of Information Act indicate that the data provided will initially be anonymized, but that companies can appeal to receive data that includes ages and postcodes. Further, while people will be able to request that their genetic data not be shared, it might not always be possible.
"While most researchers will only want access to effectively anonymized data, legal authority to access identifiable information may be provided through the consent of the citizens concerned or through legislation, such as section 251 of the NHS Act 2006," the Department of Health says, according to Doward. That section, the health department adds, says that approval may be given in cases wherre "it is very difficult to contact patients to seek their consent, or where it is vital that the data is identifiable."
Sally Davies, the chief medical officer, adds that "the privacy and confidentiality of NHS patients will be paramount at every stage of fulfilling the government's commitment to sequence 100,000 whole genomes."