SHARING SCIENTIFIC DATA AND LEGAL PROTECTION IN EUROPE
DOI:
https://doi.org/10.22293/2179507x.v14i33.2423Abstract
The purpose of the text is to analyze the General Data Protection Regulation (GDPR) which became mandatory for all member countries of the European Union, demonstrating the process of harmonizing the legislation on personal data protection with regard to data involving scientific research. The work recognizes the existence of legislative protection of sensitive personal data, but points to the need for effective protection of them, especially with regard to health by treatment agents, companies, institutions and governments. GDPR clarifications, particularly those related to the consent requirements of study participants. The amendments should aim to: (1) narrow exceptions based on national laws and increase harmonisation, (2) confirm the concept of broad consent, and (3) define a roadmap for secondary use of data. These changes will be achieved by recognized scientific societies in the field, who take the lead in preparing a document that provides guidance for the optimal interpretation of the GDPR, which will be finalized after a comment period from a broad multi-stakeholder audience. In parallel, promoting public engagement and education on relevant issues (such as different types of consent or residual risk for re-identification), both locally/nationally and internationally, is considered critical for advancement. This is a qualitative research using a descriptive method evaluating the characteristics of data protection in scientific research in the European Union.References
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