A new draft law allows people to submit their genetic data to the health information system. This helps doctors provide better treatment and prevent diseases. However, experts warn that this may be dangerous.
Maris Juha, a lecturer at the University of Tartu, says that data in the health information system is no longer equally protected. For example, insurers may request this data if there is an insurance case. This means that the data may fall into the wrong hands.
Juha is also concerned that individuals cannot always demand the deletion of all their data. Although EU laws state that individuals should be able to withdraw their consent.
Lili Milani, head of the Biobank, says they follow the laws and keep data secure. She adds that some data cannot be deleted because it is used in research. For example, data must be retained for 10 years after the end of the study.
Milani emphasizes that the new draft law does not change the principles of using genetic donor data. Businesses cannot distribute this data to third parties.