Thursday, January 10, 2019

«You have to invent a property right on your health data» - en.live-feeds.com




Subscribers article


Collective. The digital revolution and its tsunami of personal data invite us to a painful change of perspective. Our buying preferences were already monetized by the digital giants for marketing. Now, it is our health information, more valuable, which is exchanged by third parties.


When it targets a pathology, pharmaceutical research acquires digitized medical files at great expense. For example, the acquisition of the software company Flatiron by Roche in early 2018 for 1.9 billion dollars (1.65 billion euros) allowed the laboratory to get its hands on the complete medical histories of about 200,000 cancer patients, or about $ 10,000 per file. Even if the purpose is legitimate, since it involves accelerating the development of treatments, patients do not know anything about it.


So far, the law has addressed the setting of data of the body only from the point of view of the protection of privacy. In particular, since May 2018, the European Data Protection Regulation (GDPR) requires the collection of consent for any processing of personal data, the possibility of having them deleted. It reinforces the right to have information corrected or to control access to it ... It remains to be trusted to centralized platforms to apply these rules. The citizen has no means of control.


Break from "black boxes" platforms


The interest of the blockchain [technologie de stockage et de transmission d’informations] is to provide a control tool a priori. Indeed, the fact of distributing between members of a network accounting data exchange provides everyone with a way to verify their progress: it is a break from the "black boxes" platforms. Sensitive data can remain encrypted. Consents to sharing are managed through protocols that automatically check and execute access.


But the heritage of personal data is still a new idea in Europe. It is feared that the human will become a commodity like the others. French law considers personal data as emanations of the personality since the law Informatique et Libertés of 1978. They are protected by the principle of unavailability of the human body of the civil code. For health data, the "accessory" regime follows that of "principal". Since an organ, a heart, is not appropriable, it is the same with its emanation, for example an electrocardiogram plot. Regime equivalence questions, however, because our data are reproducible and often non-vital.



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