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

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

doi:10.1007/s41649-022-00231-4

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

Asian Bioeth Rev. 2022 Nov 14;16(1):47-63. doi: 10.1007/s41649-022-00231-4. eCollection 2024 Jan.

Authors

Joanna Osiejewicz¹, Dmytro M Zherlitsyn², Svitlana M Zadorozhna³, Oleksii V Tavolzhanskyi⁴, Maryna O Dei⁵

Affiliations

¹ Department of International Legal Communication, University of Warsaw, Warsaw, Poland.
² Department of the Economic Cybernetics, National University of Life and Environmental Sciences of Ukraine, Kiev, Ukraine.
³ Department of Procedural Law, Faculty of Law, Yuriy Fedkovych Chernivtsi National University, Chernivtsi, Ukraine.
⁴ Department of Criminology and Criminal and Executive Law, Yaroslav Mudryi National Law University, Kharkiv, Ukraine.
⁵ Department of Constitutional and Administrative Law, Faculty of Law, National Aviation University, Kiev, Ukraine.

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.

Keywords: Austria; Biobank; Data ethics; Data governance; Data protection; Poland; Ukraine.