scholarly journals The destruction of the ‘Windrush’ disembarkation cards: a lost opportunity and the (re)emergence of Data Protection regulation as a threat to longitudinal research

2018 ◽  
Vol 3 ◽  
pp. 112
Author(s):  
Andy Boyd ◽  
Matthew Woollard ◽  
John Macleod ◽  
Alison Park
Keyword(s):  
Data Protection ◽  
Longitudinal Research ◽  
Historical Records ◽  
Legal Basis ◽  
General Data Protection Regulation ◽  
The Public ◽  
Protection Legislation ◽  
General Data ◽  
New Research

Historical records and the research databases of completed studies have the potential either to establish new research studies or to inform follow-up studies assessing long-term health and social outcomes. Yet, such records are at risk of destruction resulting from misconceptions about data protection legislation and research ethics. The recent destruction of the Windrush disembarkation cards, which potentially could have formed the basis of a retrospective cohort study, illustrates this risk. As organisations across Europe transition to the EU General Data Protection Regulation (GDPR), this risk is being amplified due to uncertainty as to how to comply with complex new rules, and the requirement under GDPR that data owners catalogue their data and set data retention and destruction rules. The combination of these factors suggests there is a new meaningful risk that scientifically important historical records will be destroyed, despite the fact that GDPR provides a clear legal basis to hold historical records and to repurpose them for research for the public good. This letter describes this risk; details the legal basis enabling the retention and repurposing of these data; makes recommendations as to how to alleviate this risk; and finally encourages the research and research-active clinical community to contact their ‘Data Protection Officers’ to promote safe-keeping of historical records.

scholarly journals Data Sharing Under the General Data Protection Regulation

Hypertension ◽  
2021 ◽  
Vol 77 (4) ◽  
pp. 1029-1035
Author(s):  
Antonia Vlahou ◽  
Dara Hallinan ◽  
Rolf Apweiler ◽  
Angel Argiles ◽  
Joachim Beige ◽  
...  
Keyword(s):  
European Union ◽  
Data Protection ◽  
Personal Data ◽  
Research Approach ◽  
The European Union ◽  
General Data Protection Regulation ◽  
Personal Data Protection ◽  
Protection Legislation ◽  
General Data ◽  
Almost All

The General Data Protection Regulation (GDPR) became binding law in the European Union Member States in 2018, as a step toward harmonizing personal data protection legislation in the European Union. The Regulation governs almost all types of personal data processing, hence, also, those pertaining to biomedical research. The purpose of this article is to highlight the main practical issues related to data and biological sample sharing that biomedical researchers face regularly, and to specify how these are addressed in the context of GDPR, after consulting with ethics/legal experts. We identify areas in which clarifications of the GDPR are needed, particularly those related to consent requirements by study participants. Amendments should target the following: (1) restricting exceptions based on national laws and increasing harmonization, (2) confirming the concept of broad consent, and (3) defining a roadmap for secondary use of data. These changes will be achieved by acknowledged learned societies in the field taking the lead in preparing a document giving guidance for the optimal interpretation of the GDPR, which will be finalized following a period of commenting by a broad multistakeholder audience. In parallel, promoting engagement and education of the public in the relevant issues (such as different consent types or residual risk for re-identification), on both local/national and international levels, is considered critical for advancement. We hope that this article will open this broad discussion involving all major stakeholders, toward optimizing the GDPR and allowing a harmonized transnational research approach.

scholarly journals The EU General Data Protection Regulation (GDPR)

2020 ◽  
Keyword(s):  
Data Protection ◽  
Personal Data ◽  
Privacy Regulation ◽  
General Data Protection Regulation ◽  
Data Protection Directive ◽  
Ongoing Work ◽  
Protection Legislation ◽  
Recent Reform ◽  
General Data ◽  
The Eu

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.

scholarly journals Location Privacy in the Wake of the GDPR

2019 ◽  
Author(s):  
Yola Georgiadou ◽  
Rolf de By ◽  
Ourania Kounadi
Keyword(s):  
Data Protection ◽  
Location Privacy ◽  
Cultural Theory ◽  
Personal Data ◽  
The European Union ◽  
General Data Protection Regulation ◽  
Digital Ecosystem ◽  
Protection Legislation ◽  
General Data ◽  
Conducting Research

The General Data Protection Regulation (GDPR) protects the personal data of natural persons and at the same time allows the free movement of such data within the European Union (EU). Hailed as majestic by admirers and dismissed as protectionist by critics, the Regulation is expected to have a profound impact around the world, including in the African Union (AU). For European–African consortia conducting research that may affect the privacy of African citizens, the question is ‘how to protect personal data of data subjects while at the same time ensuring a just distribution of the benefits of a global digital ecosystem?’ We use location privacy as a point of departure, because information about an individual’s location is different from other kinds of personally identifiable information. We analyse privacy at two levels, individual and cultural. Our perspective is interdisciplinary: we draw from computer science to describe three scenarios of transformation of volunteered/observed information to inferred information about a natural person and from cultural theory to distinguish four privacy cultures emerging within the EU in the wake of GDPR. We highlight recent data protection legislation in the AU and discuss factors that may accelerate or inhibit the alignment of data protection legislation in the AU with the GDPR.

scholarly journals The GDPR as Global Data Protection Regulation?

AJIL Unbound ◽  
2020 ◽  
Vol 114 ◽  
pp. 5-9 ◽  
Author(s):  
Cedric Ryngaert ◽  
Mistale Taylor
Keyword(s):  
International Law ◽  
Data Protection ◽  
Personal Data ◽  
Fundamental Rights ◽  
General Data Protection Regulation ◽  
Data Protection Directive ◽  
Protection Legislation ◽  
General Data ◽  
Global Data ◽  
The Eu

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.

scholarly journals La responsabilidad proactiva de las Administraciones Públicas en la protección de datos personales.

2020 ◽  
pp. 138-153
Author(s):  
Aritz ROMEO RUIZ
Keyword(s):  
Public Administration ◽  
Data Protection ◽  
Main Idea ◽  
Personal Data ◽  
Practical Implementation ◽  
Organizational Changes ◽  
General Data Protection Regulation ◽  
The Public ◽  
General Terms ◽  
General Data

Laburpena: Lan honen helburua da administrazio publikoak datu pertsonalen tratamenduan duen erantzukizun proaktiboaren printzipioaren analisia eskaintzea, eta ikuspegi juridikoa ematea praktikan errazago aplikatzeko. Lana lau ataletan egituratuta dago. Lehenengoan, datu pertsonalen babesa arautzen duen esparru berriaren aurkezpen orokorra egiten da; hau da, Datuak Babesteko Erregelamendu Orokorrak (EB) ezartzen duen araudi berria aurkezten da. Bigarren atala erantzukizun proaktiboari buruzkoa da, administrazio publikoek datu pertsonalak tratatzeko oinarrizko printzipio gisa. Hirugarrenak proposatzen ditu administrazio publikoek praktikan erantzukizun proaktiboaren printzipioa betetzeko kontuan har ditzaketen hainbat neurri. Azkenik, laugarren atalak gogoeta egiten du antolamendu-aldaketak egiteko beharrari buruz, Erregelamendu Orokorraren printzipioak betetzen dituztela ziurtatzeko eta herritarrek eskubideak balia ditzaten ziurtatzeko; horrez gain, aipamen berezia egiten dio datuak babesteko ordezkariaren figurari. Ondorioztatzen den ideia nagusia da garrantzitsua dela administrazio publikoek datuak babesteko politika bat diseinatzea, lehenetsita aplikatuko dena, eta ez bakarrik erantzukizun politikoak dituztenei, baizik eta sektore publikoan lan egiten duten pertsona guztiei eragingo diena. Resumen: El presente trabajo tiene como objetivo ofrecer un análisis del principio de responsabilidad proactiva en el tratamiento de datos personales por parte de la administración pública, y pretende aportar una visión jurídica para facilitar su aplicación en la práctica. El trabajo está estructurado en cuatro apartados. En el primero de ellos se presenta, en términos generales, el nuevo marco regulador de la protección de datos personales, que es consecuencia del Reglamento (UE) General de Protección de Datos. El segundo apartado está dedicado a la responsabilidad proactiva como principio básico del tratamiento de datos personales por las administraciones públicas. El tercero propone una serie de medidas que las administraciones públicas pueden tener en cuenta para cumplir con el principio de responsabilidad proactiva en la práctica. Finalmente, el apartado cuarto aporta una reflexión sobre la necesidad de introducir cambios organizacionales para asegurar el cumplimiento de los principios del Reglamento General de Protección de datos y del ejercicio de derechos por la ciudadanía, con una especial mención a la figura del delegado o delegada de protección de datos. La principal idea que se concluye es la importancia de que las administraciones públicas diseñen una política de protección de datos que se aplique por defecto, e implique, no sólo a quienes ejercen responsabilidades políticas, sino a todas las personas que trabajan en el sector público. Abstract: The present work aims to offer an analysis of the principle of proactive responsibility in the treatment of personal data by the public administration, and aims to provide a legal vision to facilitate its practical implementation. The work is structured in four sections. The first of these presents, in general terms, the new regulatory framework for the protection of personal data, which is a consequence of the General Data Protection Regulation (EU). The second section is dedicated to proactive responsibility as a basic principle of the processing of personal data by public administrations. The third proposes a series of measures that public administrations can take into account to comply with the principle of proactive responsibility in practice. Finally, the fourth section provides a reflection on the need to introduce organizational changes to ensure compliance with the principles of the General Data Protection Regulation and the exercise of rights by citizens, with special reference to the figure of the Data Protection Officer. The main idea that is concluded is the importance for public administrations to design a data protection policy that is applied by default, and involves not only those who exercise political responsibilities, but also all those who work in the public sector.

scholarly journals Location Privacy in the Wake of the GDPR

2019 ◽  
Vol 8 (3) ◽  
pp. 157 ◽  
Author(s):  
Yola Georgiadou ◽  
Rolf de By ◽  
Ourania Kounadi
Keyword(s):  
Data Protection ◽  
Location Privacy ◽  
Cultural Theory ◽  
Personal Data ◽  
The European Union ◽  
General Data Protection Regulation ◽  
Digital Ecosystem ◽  
Protection Legislation ◽  
General Data ◽  
Conducting Research

The General Data Protection Regulation (GDPR) protects the personal data of natural persons and at the same time allows the free movement of such data within the European Union (EU). Hailed as majestic by admirers and dismissed as protectionist by critics, the Regulation is expected to have a profound impact around the world, including in the African Union (AU). For European–African consortia conducting research that may affect the privacy of African citizens, the question is `how to protect personal data of data subjects while at the same time ensuring a just distribution of the benefits of a global digital ecosystem?’ We use location privacy as a point of departure, because information about an individual’s location is different from other kinds of personally identifiable information. We analyse privacy at two levels, individual and cultural. Our perspective is interdisciplinary: we draw from computer science to describe three scenarios of transformation of volunteered or observed information to inferred information about a natural person and from cultural theory to distinguish four privacy cultures emerging within the EU in the wake of GDPR. We highlight recent data protection legislation in the AU and discuss factors that may accelerate or inhibit the alignment of data protection legislation in the AU with the GDPR.

Developing a Digital Welfare State: Data Protection and the Use of Automated Decision-Making in the Public Sector across Six EU Countries

2020 ◽  
Vol 1 (1) ◽  
Author(s):  
Marta Choroszewicz ◽  
Beata Mäihäniemi
Keyword(s):  
Decision Making ◽  
Public Sector ◽  
The Netherlands ◽  
Welfare State ◽  
Data Protection ◽  
New Technologies ◽  
General Data Protection Regulation ◽  
The Public ◽  
General Data ◽  
Automated Decision Making

This article uses the sociolegal perspective to address current problems surrounding data protection and the experimental use of automated decision-making systems. This article outlines and discusses the hard laws regarding national adaptations of the European General Data Protection Regulation and other regulations as well as the use of automated decision-making in the public sector in six European countries (Denmark, Sweden, Germany, Finland, France, and the Netherlands). Despite its limitations, the General Data Protection Regulation has impacted the geopolitics of the global data market by empowering citizens and data protection authorities to voice their complaints and conduct investigations regarding data breaches. We draw on the Esping-Andersen welfare state typology to advance our understanding of the different approaches of states to citizens’ data protection and data use for automated decision-making between countries in the Nordic regime and the Conservative-Corporatist regime. Our study clearly indicates a need for additional legislation regarding the use of citizens’ data for automated decision-making and regulation of automated decision-making. Our results also indicate that legislation in Finland, Sweden, and Denmark draws upon the mutual trust between public administrations and citizens and thus offers only general guarantees regarding the use of citizens’ data. In contrast, Germany, France, and the Netherlands have enacted a combination of general and sectoral regulations to protect and restrict citizens’ rights. We also identify some problematic national policy responses to the General Data Protection Regulation that empower governments and related institutions to make citizens accountable to states’ stricter obligations and tougher sanctions. The article contributes to the discussion on the current phase of the developing digital welfare state in Europe and the role of new technologies (i.e., automated decision-making) in this phase. We argue that states and public institutions should play a central role in strengthening the social norms associated with data privacy and protection as well as citizens’ right to social security.

scholarly journals Adtech and Real-Time Bidding under European Data Protection Law

2021 ◽  
Author(s):  
Michael Veale ◽  
Frederik Zuiderveen Borgesius
Keyword(s):  
Real Time ◽  
Data Protection ◽  
Mobile Applications ◽  
Security Requirements ◽  
Legal Basis ◽  
General Data Protection Regulation ◽  
European Data ◽  
Prior Consent ◽  
General Data ◽  
Data Protection Law

This paper discusses the troubled relationship between contemporary advertising technology (adtech) systems, in particular systems of real-time bidding (RTB, also known as programmatic advertising) underpinning much behavioural targeting on the web and through mobile applications. This paper analyses the extent to which practices of RTB are compatible with the requirements regarding (i) a legal basis for processing, transparency, and security in European data protection law. We first introduce the technologies at play through explaining and analysing the systems deployed online today. Following that, we turn to the law. Rather than analyse RTB against every provision of the General Data Protection Regulation (GDPR), we consider RTB in the context of the GDPR’s requirement of a legal basis for processing and the GDPR’s transparency and security requirements. We show, first, that the GDPR requires prior consent of the internet user for RTB, as other legal bases are not appropriate. Second, we show that it is difficult – and perhaps impossible – for website publishers and RTB companies to meet the GDPR’s transparency requirements. Third, RTB incentivises insecure data processing. We conclude that, in concept and in practice, RTB is structurally difficult to reconcile with European data protection law. Therefore, intervention by regulators is necessary.

Brazil’s data protection failings may harm innovation

2019 ◽  
Keyword(s):  
Data Protection ◽  
Digital Economy ◽  
Content Type ◽  
General Data Protection Regulation ◽  
Data Protection Authority ◽  
Protection Legislation ◽  
General Data ◽  
Data Protection Law ◽  
Set Up ◽  
Protection Authority

Subject Brazil's new data protection law. Significance Brazil’s General Data Protection Law (LGPD) will come into effect in August 2020. Largely mirroring the EU’s General Data Protection Regulation (GDPR), the new legislation seeks to strengthen citizen privacy while also giving legal certainty to businesses engaging in data transfers. However, unlike EU jurisdictions, Brazil will not set up an autonomous data authority to enforce its legislation. Rather, its new National Data Protection Authority (ANPD) will be directly linked to the presidency and have no budgetary independence. Impacts A reduced talent pool will limit the growth of Brazilian firms in the digital economy. Shortages of relevant talent will affect companies’ ability to innovate. The shortcomings of Brazil’s data protection legislation could add a serious hurdle to the development of its digital economy.

scholarly journals The exercisability of the right to data portability in the emerging Internet of Things (IoT) environment

2020 ◽  
pp. 146144482093403
Author(s):  
Sarah Turner ◽  
July Galindo Quintero ◽  
Simon Turner ◽  
Jessica Lis ◽  
Leonie Maria Tanczer
Keyword(s):  
Internet Of Things ◽  
Empirical Analysis ◽  
Data Protection ◽  
General Data Protection Regulation ◽  
General Data ◽  
Data Portability ◽  
Iot Devices ◽  
The Right ◽  
Data Subject

The right to data portability (RtDP), as outlined in the European Union’s General Data Protection Regulation (GDPR), enables data subjects to transmit their data from one service to another. This is of particular interest in the evolving Internet of Things (IoT) environment. This research delivers the first empirical analysis detailing the exercisability of the RtDP in the context of consumer IoT devices and the information provided to users about exercising the right. In Study 1, we reviewed 160 privacy policies of IoT producers to understand the level of information provided to a data subject. In Study 2, we tested four widely available IoT systems to examine whether procedures are in place to enable users to exercise the RtDP. Both studies showcase how the RtDP is not yet exercisable in the IoT environment, risking consumers being unable to unlock the long-term benefits of IoT systems.

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