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The EU’s next legislative goal post that opponents see as part of a big push to strip citizens of their privacy, has now reached medical histories and associated data.
Interconnecting – in effect, centralizing (and making remotely accessible) – that data is the key premise of what has now emerged as European Health Data Space (EHDS). The upcoming bill has been backed by the European Parliament (EP), its Committee on Civil Liberties, Justice and Home Affairs (LIBE), and Committee on Environment, Public Health and Food Safety (ENVI).
EP member (MEP) and lawyer Patrick Breyer, a long-time critic of this type of policy, explains that EHDS – which he voted against – would “bring together information on all medical treatments received by citizens.”
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Doctors will have to submit summaries of treatments they provide to “the new data space” – with the initial proposal not containing provisions that would allow for objections or exceptions. And while access can be restricted if a patient so wishes – the actual creation of the database can’t be prevented.
And let’s just reiterate that this might concern some of the most sensitive personal medical information: “mental disorders, sexual diseases and disorders such as impotence or infertility, HIV or drug abuse therapies,” writes Breyer.
“The EU’s plan to collect and interconnect records on all medical therapies entails irresponsible risks of data theft, hacking or loss. Even the most delicate therapies can no longer be administered off record in the future,” the German Pirate Party MEP further warned, blasting the idea as the end of medical confidentiality in the EU.
He makes a particular note of the danger that those who are less both computer and politically literate – such as the elderly or those not paying enough attention to bureaucratic decisions made by the EU (that nonetheless end up defining their lives), as well as those with actual lower level of education – all especially vulnerable in a scheme like this – would simply not be fully aware of the long-term consequences.
“(…) having to actively object with a certain authority or via a digital tool is too complicated in practice to give them a real choice,” Breyer describes a real-life scenario.
On top of that, the planned new law would seem to be clash with the established international standards that require (fully informed) consent for patients’ medical information to be “shared” – and Breyer references the World Medical Association’s International Code of Medical Ethics and the Helsinki declaration on Ethical Principles for Medical Research.
The EP will vote in December on this recommended legislation, when amendments will be considered as well. Right now, people polled about the topic in 44% of cases worry about health data theft, while 40% fear unauthorized access.