National Regulation on Processing Data for Scientific Research Purposes and Biobanking Activities: Reflections on the Experience in Austria

Author:

Osiejewicz Joanna,Zherlitsyn Dmytro M.,Zadorozhna Svitlana M.,Tavolzhanskyi Oleksii V.,Dei Maryna O.

Abstract

Abstract  The application of the latest technologies in biology and medicine has brought them to a qualitatively new level of possibilities. Worldwide, biobanking is actively developing through the creation of biobanks of various types and purposes, whose resources are used to solve therapeutic or scientific problems. Legal science remains an open question concerning the boundary that runs between the right to data protection and the scope of disclosure of data needed for medical purposes. In this article, the author considers peculiarities of data processing in the context of biobanking activity on the example of Austria and its national legislation. In addition, the article reveals features of the approaches of the European Court of Human Rights (ECtHR) and the Council of Europe to the issue of biobanking in general, its characteristics in the context of data, and legal regulation of this phenomenon in the national law of states. The author devoted an important part of the study to the role of Austria’s experience in the context of data processing for scientific purposes and the development of biobanking for a number of other European states. The aim of the article is to analyze the Austrian legislation on data processing for scientific research and biobanking, the attitude of the Council of Europe to this phenomenon, and the practice of the ECtHR, as well as to consider the impact of the current world situation on these activities. The leading method of research used in the article is the formal-legal method. The article analyzes the Austrian law in the context of data processing in medical research, the relationship of the specifics of personal data protection, and the need to disclose them for scientific purposes. The author pays special attention to the influence of Austrian law on the legislation of other countries, which is reflected in the conclusions to the article. In addition, based on an analysis of the application of the Austrian experience to the legislation of Poland and Ukraine, the author points out the necessary changes that should be made in the laws of these countries.

Publisher

Springer Science and Business Media LLC

Subject

Health Policy,Philosophy,Health (social science)

Reference29 articles.

1. Civil Code of Ukraine. 2003. https://zakon.rada.gov.ua/laws/show/435-15#Text. Accessed 7 Nov 2022.

2. Constitution of the Republic of Poland. 1997. https://www.sejm.gov.pl/prawo/konst/angielski/kon1.htm. Accessed 6 Nov 2022.

3. Council of Europe. 2006. Recommendation REC(2006)4 of the Committee of Ministers to member states on research on biological materials of human origin. https://search.coe.int/cm/Pages/result_details.aspx?ObjectID=09000016805d84de. Accessed 6 Nov 2022. 

4. Council of Europe. 2016 Recommendation CM/REC(2016)6 of the Committee of Ministers to member States on research on biological materials of human origin. https://search.coe.int/cm/Pages/result_details.aspx?ObjectId=090000168064e8ff. Accessed 6 Nov 2016.

5. Data Protection Act [Datenschutzgesetz]. 1999. Bundesgesetz zum Schutz natürlicher Personen bei der Verarbeitung personenbezogener Daten (NR: GP XX RV 1613 AB 2028 S. 179. BR: 5992 AB 6034 S. 657). StF: BGBl. I Nr. 165/1999. https://www.ris.bka.gv.at/GeltendeFassung.wxe?Abfrage=bundesnormen&Gesetzesnummer=10001597. Accessed 7 Nov 2022.

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