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Genomic data security in the era of data capitalism: systematic threat or unwarranted alarm
Małgorzata Madej1, Maria Małgorzata Sąsiadek2, Michał Witt3
1University of Wrocław, Wrocław, Poland.
Abstract:
The paper explores the question of threats related to commercial processing of genetic data putting the analysis in the context of data capitalism. Modern technological, social and economic changes translate to development of huge databases and their commercial application. These phenomena concern processing of medical data and medical services too. The authors review the literature on risks associated with unauthorized use of personal data and present also some of the relevant legal acts. The focus is on problems arising from data subjects' decisions to provide their data to commercial controllers for lifestyle or genealogy testing purposes. While data subjects are in full right to consent to such processing, there are serious questions about further security of the data and control over their processing, which is especially problematic with genetic data, considering their unique nature. The paper illustrates this concern with the case of 23andMe and bankruptcy of this medical service provider, presenting the challenges of executing effective control over such actors, either by data subjects themselves or authorities. The paper highlights the need to update legal provisions to accommodate the processes occurring in the social environment.
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