Conditions for the Admissibility of Scienti C Research in Biomedicine Biobanking: A Challenge in Times of Big Data
Conditions for the Admissibility of Scienti C Research in Biomedicine Biobanking: A Challenge in Times of Big Data

Summary/Abstract: The subject of the article is the analysis of the rights of donors donating their biologicalsamples to biobanks in the 21st century. Issues regarding donor rights have been analyzedsince the 1980s, however, changing times, creating Big Data databases as well as evolvinglegal awareness of donors meant that today the role of donors in the biobanking processshould be perceived differently. Donors become active subjects of scientific researchwhich is connected with the need to answer questions about the obligations to informthem about the results of scientific research conducted on their samples or incidentalfindings. Likewise, the combination of data registers and the creation of Big Data basisrequire the re-thinking of terms such as the protection of personal data of donors or theanonymisation of their data. These issues are imposed by negligence or complete lackof legal regulation of the biobanking, which makes the legal protection of the rights ofdonors dependent on the will of a particular biobank. All these phenomena result in thenecessity of new approaches to the rights of donors and their inclusion in the future legalregulation.

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