How private biz can link YOU to 'anonymised' medical data
And all without your consent, FOI request reveals
Private sector businesses could obtain "identifiable" information about patients without their consent under a new scheme that will see medical data made commercially accessible, according to information disclosed by the government.
Under plans previously unveiled by the government, a new research body, the Clinical Practice Research Datalink (CPRD), would be able to bring together anonymised medical records from different sources and make the data available for sale to private sector businesses. Patients would be able to opt out if they did not wish their data to be used. However, the Department of Health said that there would be a procedure whereby companies could be given access to identifiable information about patients whose data is used by the CPRD even if patients did not consent to such disclosure.
The Department of Health outlined the possibility in response to freedom of information (FOI) requests submitted by Ethics and Genetics, a pressure group in the life sciences sphere.
"Information may be made accessible where it has been effectively anonymised or where there is appropriate legal authority to make it accessible," the health department said, according to an Ethics and Genetics report (307KB PDF). "Whilst most researchers will only want access to effectively anonymised 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 can be used to authorise access for specific purposes."
"In most cases, the Department would expect consent to be obtained for disclosures of identifiable data [to the private sector]," the department said in a separate response to another FOI request from the group. "However, projects may apply to the Ethics and Confidentiality Committee for Section 251 approval where consent cannot be obtained. There are circumstances where it is very difficult to contact patients to seek their consent, or where it is vital that the data are identifiable, for example, to link data with a separate data set."
In its report, Ethics and Genetics said that the Department of Health had revealed that Section 251 approvals for processing of personal data without patient consent had been granted 54 times in 2010/11. The group said it was concerned about marketing practices that could be employed if companies were able to link anonymised medical data to individuals.
"A national genetic storage facility, linked to personal medical records, and made available to private organisations at a cost, is a considerable development with serious implications," Edward Hockings of Ethics and Genetics said. "Not least, the risks implied by our genomic information moving around the private sector. How can we be sure that this will not affect insurance claims or result in genetic discrimination?"
"The impending scenario of personal genetic information moving between the public and private sectors puts the individual at risk of being targeted by aggressive marketing strategies based a genetic predisposition to illness," he added. "The commercialisation of personal medical and genetic data, and the relaxation of the medical research legal framework, opens up the possibility that information contained on individual genomes could be used for purposes far beyond the public good."
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