scholarly journals To What Extent Does the EU General Data Protection Regulation (GDPR) Apply to Citizen Scientist-led Health Research with Mobile Devices?

2019 ◽  
Author(s):  
Edward Dove ◽  
Jiahong Chen

2020 ◽  
Vol 48 (S1) ◽  
pp. 187-195
Author(s):  
Edward S. Dove ◽  
Jiahong Chen

In this article, we consider the possible application of the European General Data Protection Regulation (GDPR) to “citizen scientist”-led health research with mobile devices. We argue that the GDPR likely does cover this activity, depending on the specific context and the territorial scope. Remaining open questions that result from our analysis lead us to call for lex specialis that would provide greater clarity and certainty regarding the processing of health data by for research purposes, including these non-traditional researchers.



This new book provides an article-by-article commentary on the new EU General Data Protection Regulation. Adopted in April 2016 and applicable from May 2018, the GDPR is the centrepiece of the recent reform of the EU regulatory framework for protection of personal data. It replaces the 1995 EU Data Protection Directive and has become the most significant piece of data protection legislation anywhere in the world. This book is edited by three leading authorities and written by a team of expert specialists in the field from around the EU and representing different sectors (including academia, the EU institutions, data protection authorities, and the private sector), thus providing a pan-European analysis of the GDPR. It examines each article of the GDPR in sequential order and explains how its provisions work, thus allowing the reader to easily and quickly elucidate the meaning of individual articles. An introductory chapter provides an overview of the background to the GDPR and its place in the greater structure of EU law and human rights law. Account is also taken of closely linked legal instruments, such as the Directive on Data Protection and Law Enforcement that was adopted concurrently with the GDPR, and of the ongoing work on the proposed new E-Privacy Regulation.



2021 ◽  
Vol 12 ◽  
Author(s):  
Michael J. S. Beauvais ◽  
Bartha Maria Knoppers

The COVID-19 pandemic has underscored the need for new ways of thinking about data protection. This is especially so in the case of health research with children. The responsible use of children’s data plays a key role in promoting children’s well-being and securing their right to health and to privacy. In this article, we contend that a contextual approach that appropriately balances children’s legal and moral rights and interests is needed when thinking about data protection issues with children. We examine three issues in health research through a child-focused lens: consent to data processing, data retention, and data protection impact assessments. We show that these issues present distinctive concerns for children and that the General Data Protection Regulation provides few bright-line rules. We contend that there is an opportunity for creative approaches to children’s data protection when child-specific principles, such as the best interests of the child and the child’s right to be heard, are put into dialogue with the structure and logic of data protection law.



AJIL Unbound ◽  
2020 ◽  
Vol 114 ◽  
pp. 5-9 ◽  
Author(s):  
Cedric Ryngaert ◽  
Mistale Taylor

The deterritorialization of the Internet and international communications technology has given rise to acute jurisdictional questions regarding who may regulate online activities. In the absence of a global regulator, states act unilaterally, applying their own laws to transborder activities. The EU's “extraterritorial” application of its data protection legislation—initially the Data Protection Directive (DPD) and, since 2018, the General Data Protection Regulation (GDPR)—is a case in point. The GDPR applies to “the processing of personal data of data subjects who are in the Union by a controller or processor not established in the Union, where the processing activities are related to: (a) the offering of goods or services . . . to such data subjects in the Union; or (b) the monitoring of their behaviour . . . within the Union.” It also conditions data transfers outside the EU on third states having adequate (meaning essentially equivalent) data protection standards. This essay outlines forms of extraterritoriality evident in EU data protection law, which could be legitimized by certain fundamental rights obligations. It then looks at how the EU balances data protection with third states’ countervailing interests. This approach can involve burdens not only for third states or corporations, but also for the EU political branches themselves. EU law viewed through the lens of public international law shows how local regulation is going global, despite its goal of protecting only EU data subjects.



2019 ◽  
Vol 16 (1) ◽  
pp. 158-191 ◽  
Author(s):  
Christopher Kuner

The importance of personal data processing for international organizations (‘IOs’) demonstrates the need for them to implement data protection in their work. The EU General Data Protection Regulation (‘GDPR’) will be influential around the world, and will impact IOs as well. Its application to them should be determined under relevant principles of EU law and public international law, and it should be interpreted consistently with the international obligations of the EU and its Member States. However, IOs should implement data protection measures regardless of whether the GDPR applies to them in a legal sense. There is a need for EU law and international law to take each other better into account, so that IOs can enjoy their privileges and immunities also with regard to EU law and avoid conflicts with international law, while still providing a high level of data protection in their operations.



Author(s):  
Laura Bradford ◽  
Mateo Aboy ◽  
Kathleen Liddell

Abstract International health research increasingly depends on collaboration and combination using medical data to advance treatment and drug discovery. The European Union (EU), through its General Data Protection Regulation, has tightened the rules for sharing data across borders to protect individual privacy. These new rules threaten cooperation between the EU and the USA, the two largest public funders of biomedical research. This article analyzes the primary pathway for sharing research data with the USA, the US–EU Privacy Shield††, and argues that the Shield is ill-suited to support complex health studies. Its legitimacy is in question under both EU and US law, and its terms are too restrictive for the variety of exchanges underlying research, treatment, and care. As an alternative, we propose that the USA seek an additional sector-based adequacy determination based on the existing US health privacy law, the Health Insurance Portability and Accountability Act. A sector-specific approach to adequacy for health would avoid many of the most contentious issues that divide the USA and EU on data protection. It could also serve as a model for other third-party jurisdictions and facilitate international harmonization of health research practices.



IEEE Access ◽  
2019 ◽  
Vol 7 ◽  
pp. 111709-111726 ◽  
Author(s):  
Mamoona N. Asghar ◽  
Nadia Kanwal ◽  
Brian Lee ◽  
Martin Fleury ◽  
Marco Herbst ◽  
...  


2019 ◽  
Vol 21 (6) ◽  
pp. 1307-1324 ◽  
Author(s):  
Nicholas Martin ◽  
Christian Matt ◽  
Crispin Niebel ◽  
Knut Blind

AbstractWhile many data-driven businesses have seen rapid growth in recent years, their business development might be highly contingent upon data protection regulation. While it is often claimed that stricter regulation penalizes firms, there is only scarce empirical evidence for this. We therefore study how data protection regulation affects startup innovation, exploring this question during the ongoing introduction of the EU General Data Protection Regulation (GDPR). Our results show that the effects of data protection regulation on startup innovation are complex: it simultaneously stimulates and constrains innovation. We identify six distinct firm responses to the effects of the GDPR; three that stimulate innovation, and three that constrain it. We furthermore identify two key stipulations in the GDPR that account for the most important innovation constraints. Implications and potential policy responses are discussed.



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