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ICCL Recommendations in European Parliament Text on the Health Data Space
- jruohonen 3y ago"As we had recommended, the Parliament removes 'electronic data related to insurance status, professional status, education, lifestyle, wellness and behaviour data relevant to health' from the categories of electronic health data that are allowed for secondary use. Use of health data to train AI systems is limited to scientific research." Now this type of data begs a question: Do some European states have data on "lifestyle" or "wellness", and what do these even mean? "Second, natural persons can opt-out from their health data being used for secondary uses. This opt-out possibility did not exist in the European Commission's initial text from 2022. Further, data from wellness applications and biobanks, and genetic data can be used for secondary uses only if natural persons opt-in. This gives people more control over their health data." Sounds reasonable. "There is still room for improvement. We are concerned that data generated by wellness applications is allowed for secondary uses. Such data is usually not of high quality but can reveal intimate details about a person’s life." Not only that. Please consider also risks beyond confidentiality, among these integrity; it is easy enough to fake data for whatever purpose, either by oneself or a third-party, or a third-party's third-party, and so forth.