The European Union (EU) is struggling to come up with a way to access people's sensitive and private medical records without their con...
The European Union (EU) is struggling to come up with a way to access people's sensitive and private medical records without their consent in such a way that it will still appear to the public that the EU cares about patient privacy.
A recent vote in the European Parliament (EP) saw most members of parliament (MPs) voting to allow government access to private medical records without patient permission.
The plenary vote opposed the creation of a wholesale, mandatory electronic medical records system for every person in the EU. At the same time, an EP majority expressed support for a data repository called the European Health Data Space (EHDS) that would basically constitute a centralized electronic medical records database containing the sensitive health data of every single person living in Europe.
According to privacy and digital security advocate and lawyer MEP Patrick Breyer, the EHDS would be remotely accessible and contain health records on every single medical treatment that every single European person has ever received, as well as every medical treatment that every single European person will receive in the future.
Breyer, a member of Germany's Pirate party, proposed a last-minute amendment to the vote that will allow individual European nation-states to allow their citizens to object to having their sensitive health data included in the EHDS.
Patient privacy on EU's chopping block
In both Germany and Austria, the program is already set up to be "opt-out" rather than "opt-in." This means that unless a person spends the time and effort to remove himself or herself from the EHDS with a request, his or her medical records will automatically be opted into the program.
The text of the legislation that the EP passed will now become the subject of negotiations among the bloc's 25 national government that currently do not even have an opt-out provision in place to protect patients who choose not to participate in the EHDS.
"For many patients who have little time or limited language skills, or who are older, it is too complicated to have to object in writing to a specific authority or to use digital tools to object," Breyer said, adding that a second amendment he proposed would have mandated patient consent before any medical data is shared with doctor or researchers. That second amendment was rejected by the EP.
"A compulsory electronic patient file with Europe-wide access entails irresponsible risks of theft, hacking or loss of the most personal treatment data and threatens to deprive patients of any control over the collection of their illnesses and disorders," Breyer added.
Breyer is most concerned about people who suffer from highly sensitive illnesses and disorders that they would prefer to keep private, as well as people in need of certain procedures that they might be deterred from trying to seek help for once the EHDS is in place.
"In the trilogue negotiations, I will fight to ensure that national opt-out schemes are clearly allowed for in the legislation," Breyer promised.
"International standards such as the International Code of Medical Ethics of the World Medical Association or the Helsinki Declaration on the Ethical Principles of Medical Research have so far required that the patient’s consent be obtained before medical information is disclosed. An opinion poll we commissioned confirms that citizens expect to be asked for their consent before their health data is shared. Every website asks us for permission before setting a cookie, but we are not to be asked before our health data is shared? This system takes away patients' control over their data and is unacceptable."
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