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

IF 1.3 Q3 ETHICS Asian Bioethics Review Pub Date : 2022-11-14 DOI:10.1007/s41649-022-00231-4

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

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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.

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关于为科学研究目的和生物银行活动处理数据的国家条例：对奥地利经验的思考。

生物和医学领域最新技术的应用使生物和医学的发展达到了一个质的飞跃。在世界范围内，通过建立各种类型和目的的生物银行，生物银行正在积极发展，其资源被用于解决治疗或科学问题。关于数据保护权与医疗目的所需数据披露范围之间的界限，法律科学仍是一个未决问题。在本文中，作者以奥地利及其国家立法为例，探讨了生物银行活动中数据处理的特殊性。此外，文章还揭示了欧洲人权法院（ECtHR）和欧洲委员会（Council of Europe）对生物银行问题的一般处理方式、其在数据方面的特点以及各国国内法对这一现象的法律规范。作者将研究的重要部分放在了奥地利在为科学目的处理数据方面的经验所起的作用以及其他一些欧洲国家生物银行的发展上。文章旨在分析奥地利关于科学研究数据处理和生物银行的立法、欧洲委员会对这一现象的态度和欧洲人权法院的做法，并考虑当前世界形势对这些活动的影响。文章采用的主要研究方法是形式-法律方法。文章分析了奥地利在医学研究数据处理方面的法律、个人数据保护的具体内容与出于科学目的披露这些数据的必要性之间的关系。作者特别关注奥地利法律对其他国家立法的影响，这一点在文章的结论中有所体现。此外，在分析奥地利经验在波兰和乌克兰立法中的应用的基础上，作者指出了这些国家的法律应做出的必要修改。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Asian Bioethics Review Multiple-

CiteScore

6.20

自引率

3.40%

发文量

期刊介绍： Asian Bioethics Review (ABR) is an international academic journal, based in Asia, providing a forum to express and exchange original ideas on all aspects of bioethics, especially those relevant to the region. Published quarterly, the journal seeks to promote collaborative research among scholars in Asia or with an interest in Asia, as well as multi-cultural and multi-disciplinary bioethical studies more generally. It will appeal to all working on bioethical issues in biomedicine, healthcare, caregiving and patient support, genetics, law and governance, health systems and policy, science studies and research. ABR provides analyses, perspectives and insights into new approaches in bioethics, recent changes in biomedical law and policy, developments in capacity building and professional training, and voices or essays from a student’s perspective. The journal includes articles, research studies, target articles, case evaluations and commentaries. It also publishes book reviews and correspondence to the editor. ABR welcomes original papers from all countries, particularly those that relate to Asia. ABR is the flagship publication of the Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore. The Centre for Biomedical Ethics is a collaborating centre on bioethics of the World Health Organization.