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Introducing Key Elements Regarding Access to Personal Data for Scientific Research in the Perspective of Developing Innovative Medicines
European Journal of Health Law Pub Date : 2020-05-18 , DOI: 10.1163/15718093-bja10011
Jean Herveg 1 , Annagrazia Altavilla 2
Affiliation  

This article aims at opening discussions and promoting future research about key elements that should be taken into account when considering new ways to organise access to personal data for scientific research in the perspective of developing innovative medicines. It provides an overview of these key elements: the different ways of accessing data, the theory of the essential facilities, the Regulation on the Free Flow of Non-personal Data, the Directive on Open Data and the re-use of public sector information, and the General Data Protection Regulation (GDPR) rules on accessing personal data for scientific research. In the perspective of fostering research, promoting innovative medicines, and having all the raw data centralised in big databases localised in Europe, we suggest to further investigate the possibility to find acceptable and balanced solutions with complete respect of fundamental rights, as well as for private life and data protection.



中文翻译:

从开发创新药物的角度介绍有关获取用于科学研究的个人数据的关键要素

本文旨在就开发创新药物的角度考虑组织访问个人数据以进行科学研究的新方法时应考虑的关键要素展开讨论并促进未来的研究。它概述了这些关键要素:访问数据的不同方式、基本设施的理论、非个人数据自由流动条例、开放数据指令和公共部门信息的再利用,和通用数据保护条例 ( GDPR)) 有关为科学研究访问个人数据的规则。从促进研究、推广创新药物以及将所有原始数据集中在欧洲本地化的大数据库中的角度来看,我们建议进一步研究在完全尊重基本权利的情况下找到可接受和平衡的解决方案的可能性,以及私人生命和数据保护。

更新日期:2020-05-18
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