Is the GDPR and Its Right to Data Portability a Major Enabler of Citizen Science?

Global Jurist ◽  
2018 ◽  
Vol 18 (2) ◽  
Author(s):  
Paul Quinn
Keyword(s):  
Citizen Science ◽  
Scientific Research ◽  
Legal Rights ◽  
The Internet ◽  
Self Monitoring ◽  
General Data Protection Regulation ◽  
Legal Context ◽  
Wide Range ◽  
General Data ◽  
Data Portability

Abstract Citizen science is an emerging trend with an ever greater number of adherents. It involves the collection and contribution of large amounts of data by private individuals for scientific research. Often such data will concern the individuals themselves and will be collected through processes of self monitoring. This phenomenon has been greatly influenced by the Internet of Things (IoT) and the connectivity of a wide range monitoring devices through the internet. In collecting such data use will often be made of the services of various commercial organisations, for example that offer cloud storage services. The possibility of data portability is extremely important in citizen science as it allows individuals (or data subjects) to be able move their data from one source to another (i. e. to new areas of scientific research). This article explores the limits and possibilities that legal rights to data portability offer, in particular the new right as outlined by the European Union’s General Data Protection Regulation. In doing so this article will look at where this right (and how it operates in the international legal context) is able to facilitate the phenomenon of citizen science.

scholarly journals The Role of Blockchain in Cyber Security

2021 ◽  
Vol 3 (1) ◽  
Author(s):  
Dylan Rafferty ◽  
Kevin Curran
Keyword(s):  
Data Storage ◽  
Cyber Security ◽  
Board Members ◽  
The Internet ◽  
Network Architectures ◽  
General Data Protection Regulation ◽  
Security Breaches ◽  
General Data ◽  
The Internet Of Things

Cyber security breaches are on the rise globally. Due to the introduction of legislation like the EU’s General Data Protection Regulation (GDPR), companies are now subject to further financial penalties if they fail to meet requirements in protecting user information.  In 2018, 75% of CEOs and board members considered cyber security and technology acquisitions among their top priorities, and blockchain based solutions were among the most considered options. Blockchain is a decentralised structure that offers multiple security benefits over traditional, centralised network architectures. These two approaches are compared in this chapter in areas such as data storage, the Internet of Things (IoT) and Domain Name System (DNS) in order to determine blockchain’s potential in the future of cyber security.

scholarly journals Transparency you can trust: Transparency requirements for artificial intelligence between legal norms and contextual concerns

2019 ◽  
Vol 6 (1) ◽  
pp. 205395171986054 ◽  
Author(s):  
Heike Felzmann ◽  
Eduard Fosch Villaronga ◽  
Christoph Lutz ◽  
Aurelia Tamò-Larrieux
Keyword(s):  
Artificial Intelligence ◽  
Data Protection ◽  
Contextual Factors ◽  
Information Provision ◽  
Human Robot Interaction ◽  
Future Research ◽  
General Data Protection Regulation ◽  
Wide Range ◽  
General Data ◽  
The Impact

Transparency is now a fundamental principle for data processing under the General Data Protection Regulation. We explore what this requirement entails for artificial intelligence and automated decision-making systems. We address the topic of transparency in artificial intelligence by integrating legal, social, and ethical aspects. We first investigate the ratio legis of the transparency requirement in the General Data Protection Regulation and its ethical underpinnings, showing its focus on the provision of information and explanation. We then discuss the pitfalls with respect to this requirement by focusing on the significance of contextual and performative factors in the implementation of transparency. We show that human–computer interaction and human-robot interaction literature do not provide clear results with respect to the benefits of transparency for users of artificial intelligence technologies due to the impact of a wide range of contextual factors, including performative aspects. We conclude by integrating the information- and explanation-based approach to transparency with the critical contextual approach, proposing that transparency as required by the General Data Protection Regulation in itself may be insufficient to achieve the positive goals associated with transparency. Instead, we propose to understand transparency relationally, where information provision is conceptualized as communication between technology providers and users, and where assessments of trustworthiness based on contextual factors mediate the value of transparency communications. This relational concept of transparency points to future research directions for the study of transparency in artificial intelligence systems and should be taken into account in policymaking.

Introducing Key Elements Regarding Access to Personal Data for Scientific Research in the Perspective of Developing Innovative Medicines

2020 ◽  
Vol 27 (3) ◽  
pp. 195-212
Author(s):  
Jean Herveg ◽  
Annagrazia Altavilla
Keyword(s):  
Data Protection ◽  
Open Data ◽  
Scientific Research ◽  
Personal Data ◽  
Private Life ◽  
Fundamental Rights ◽  
Future Research ◽  
General Data Protection Regulation ◽  
Public Sector Information ◽  
General Data

Abstract 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.

Oblivion Is Full of Memory

2021 ◽  
pp. 441-465
Author(s):  
Anabelen Casares Marcos
Keyword(s):  
Data Protection ◽  
Personal Information ◽  
Self Determination ◽  
Current Status ◽  
The Internet ◽  
General Data Protection Regulation ◽  
Legal Duty ◽  
General Data ◽  
The Right ◽  
The Eu

The right to informational self-determination has raised bitter debate over the last decade as to the opportunity and possible scope of the right to demand withdrawal from the internet of personal information which, while true, might represent a detriment that there is no legal duty to put up with. The leading case in this topic is that of Mario Costeja, Judgment of the EU Court of Justice, May 13, 2014. The interest of recent European jurisprudence lies not so much in the recognition of such a right but in the appreciation of certain limits to its implementation, assisting data protection authorities in balancing the rights at stake in each case. Reflection on the current status of the issue considers rights and duties imposed in the matter by Regulation (EU) 2016/679, of 27 April, known as the new General Data Protection Regulation.

scholarly journals The Right to Data Portability: conception, status quo, and future directions

2021 ◽  
Author(s):  
Sophie Kuebler-Wachendorff ◽  
Robert Luzsa ◽  
Johann Kranz ◽  
Stefan Mager ◽  
Emmanuel Syrmoudis ◽  
...  
Keyword(s):  
Service Providers ◽  
Personal Data ◽  
The European Union ◽  
Future Directions ◽  
General Data Protection Regulation ◽  
Digital Service ◽  
General Data ◽  
Data Portability ◽  
The One ◽  
The Right

AbstractFor almost three years, the General Data Protection Regulation (GDPR) has been granting citizens of the European Union the right to obtain personal data from companies and to transfer these data to another company. The so-called Right to Data Portability (RtDP) promises to significantly reduce switching costs for consumers in digital service markets, provided that its potential is effectively translated into reality. Thus, of all the consumer rights in the GDPR, the RtDP has the potential to be the one with the most significant implications for digital markets and privacy. However, our research shows that the RtDP is barely known among consumers and can currently only be implemented in a fragmented manner—especially with regard to the direct transfer of data between online service providers. We discuss several ways to improve the implementation of this right in the present article.

scholarly journals Research Biobanks and Health Databases: The WMA Declaration of Taipei, Added Value to European Legislation (Soft and Hard Law)

2018 ◽  
Vol 25 (5) ◽  
pp. 501-516
Author(s):  
Gauthier Chassang ◽  
Emmanuelle Rial-Sebbag
Keyword(s):  
Scientific Research ◽  
Added Value ◽  
General Assembly ◽  
General Data Protection Regulation ◽  
European Guidelines ◽  
Health Related Research ◽  
Health Related ◽  
General Data ◽  
Research Biobanks ◽  
Essential Contribution

AbstractBiobanks and health databases make an essential contribution to health-related research (‘5P medicine’: predictive/preventive/personalised/participatory/provable). Since 1947, the World Medical Association (WMA) has addressed important issues in medical practice and scientific research, adopting guidelines that are recognised as global ethical standards. In October 2016, the WMA’s 67th General Assembly, held in Taipei, Taiwan, adopted a new Declaration on the Ethical Considerations regarding Health Databases and Biobanks, revising the Declaration adopted by the 53rd WMA General Assembly in 2002. Considering the way health databases and biobanks are currently used in research, the new recommendations are designed to facilitate the responsible collection and storage of human samples and/or associated data, and the provision of these bioresources for scientific research aimed at benefitting patients and populations. We analyse the Declaration of Taipei’s scope and content, highlighting its innovative features compared with other recent European guidelines and the General Data Protection Regulation (GDPR).

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