A Critical Analysis of the Efficacy of the GDPR as a Framework for the Protection of Genetic Privacy in Biobanking

2021 ◽  
pp. 192-255
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Analysis ◽  
Great Majority ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
Adaptation Mechanisms ◽  
General Data ◽  
The Impact

This chapter presents a critical analysis of the efficacy of the General Data Protection Regulation (GDPR) as a framework for the protection of genetic privacy in biobanking. In this regard, it outlines twenty-three problems concerning the standard of protection offered by the GDPR, assessing the degree to which each problem casts doubt on the efficacy of the GDPR. The chapter considers whether there are factors evident which are likely to mitigate the severity of the impact of each problem, as well as whether each problem is subject to resolution——either through the GDPR's internal interpretation and adaptation mechanisms or through external legislation operating in tandem with the GDPR. The analysis demonstrates that the great majority of problems are not as severe as they initially seem and, as a result, do not call into question the efficacy of the GDPR as a framework for the protection of genetic privacy in biobanking. It also shows that all problems which either require a solution, or would benefit from a solution, can be resolved via the GDPR's internal mechanisms or via external law operating in parallel with the GDPR, or both.

The Protection of Genetic Privacy in Biobanking at International Level

2021 ◽  
pp. 67-90
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Analysis ◽  
Baseline Level ◽  
International Level ◽  
Legal Systems ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
International Instruments

This chapter sketches a baseline level of protection for genetic privacy rights in biobanking, against which legal systems, including the General Data Protection Regulation (GDPR), might be compared. This baseline level of protection is provided via identifying principles dealing with the protection of all types of genetic privacy rights, and rights holders, in biobanking in the international framework. The chapter identifies two types of international principles: common international principles—principles identified in a majority of all biobank-relevant international instruments; and emerging international principles—principles identifiable in a majority of biobank-specific international instruments. It also offers a critical analysis of the protection offered under the international framework. This critique does not aim to undermine the legitimacy of regarding identified international principles as offering a baseline level of protection. Rather, it merely aims to highlight that the protection provided has flaws, and thus should not be regarded as definitive or perfect.

Protecting Genetic Privacy in Biobanking through Data Protection Law

2021 ◽  
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Critical Infrastructure ◽  
Legal Framework ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
Research Biobanks ◽  
The Subject ◽  
Data Protection Law

Biobanks are critical infrastructure for medical research. Biobanks, however, are also the subject of considerable ethical and legal uncertainty. Given that biobanks process large quantities of genomic data, questions have emerged as to how genetic privacy should be protected. What types of genetic privacy rights and rights holders should be protected and to what extent? Since 25 May 2018, the General Data Protection Regulation (GDPR) has applied and now occupies a key position in the European legal framework for the regulation of biobanking. This book takes an in-depth look at the function, problems, and opportunities presented by European data protection law under the GDPR as a framework for the protection of genetic privacy in biobanking. It argues that the substantive framework presented by the GDPR already offers an admirable baseline level of protection for the range of genetic privacy rights engaged by biobanking. The book further contends that while numerous problems with this standard of protection are indeed identifiable, the GDPR offers the flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to realise these solutions.

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.

Conclusion

2021 ◽  
pp. 256-260
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Baseline Level ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
Early Stages ◽  
European Data ◽  
General Data ◽  
Data Protection Law

This concluding chapter argues that European data protection law, under the General Data Protection Regulation (GDPR), can and ought to be looked at to play a central role in the protection of genetic privacy in biobanking in Europe. In the first instance, the substantive framework presented by the GDPR already offers an impressive baseline level of protection for genetic privacy. In turn, while numerous problems with this baseline standard of protection are identifiable, the GDPR offers the normative flexibility to accommodate solutions to these problems, as well as the procedural mechanisms to facilitate the realisation of solutions. The interaction between GDPR and biobanking is still, however, in the early stages. Whether this potential is realised now depends on the decisions and actions of regulatory stakeholders in the biobanking space. Their decisions have the potential to optimise or undermine the GDPR as a system for the protection of genetic privacy in biobanking. The biobanking community also have consequential choices as to how they perceive and operationalise the GDPR.

Introduction

2021 ◽  
pp. 1-6
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Genomic Data ◽  
Genomic Research ◽  
Privacy Rights ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
General Data ◽  
Research Questions ◽  
The Law

This introductory chapter provides an overview of the protection of genetic privacy in biobanking. The fact that genomic research relies on the processing of large quantities of individuals' genomic data has raised new questions as to which forms of privacy right are engaged by research, and as to which privacy rights holders are engaged by research: questions of genetic privacy. Ordinarily, one might look to the law to provide some clue, or image, as to which genetic privacy rights are worthy of protection and as to what an effective and proportionate approach to their protection should look like. In this regard, a brief look at the legal landscape relevant to biobanking in Europe reveals a great quantity of legislation apparently relevant for the protection of genetic privacy in biobanking. This book then takes an in-depth look at the function, problems, and opportunities presented by the General Data Protection Regulation (GDPR) as a framework for the protection of genetic privacy in biobanking in Europe.

Do We Need Data Protection at All?

2021 ◽  
pp. 91-128
Author(s):  
Dara Hallinan
Keyword(s):  
Data Protection ◽  
Thought Experiment ◽  
Legal Systems ◽  
Genetic Privacy ◽  
General Data Protection Regulation ◽  
European Data ◽  
Viable Solution ◽  
General Data ◽  
Data Protection Law ◽  
The Uk

This chapter assesses whether there is any need to consider European data protection law as a framework for the protection of genetic privacy in biobanking in Europe at all. To answer the question, the chapter conducts a thought experiment and examines what the standard of protection in Europe would look like if one were to exclude data protection law from consideration. This is merely a thought experiment, as data protection already plays, and will continue to play, a significant role in the protection of genetic privacy in biobanking in Europe. The exercise is enlightening, however, in showing the extent of flaws in protection in European legal systems stripped of data protection. In this regard, the chapter then maps the protection provided to genetic privacy in biobanking by the EU's, and three European states'—Estonia, Germany, and the UK—legal systems. It then engages in a critical analysis, highlighting the significant inadequacy of the protection provided by these systems excluding data protection law. Finally, the chapter shows why, generally, European data protection law under the General Data Protection Regulation (GDPR) looks a viable solution to address the problems displayed by other approaches.

The benefits and challenges of general data protection regulation for the information technology sector

2019 ◽  
Vol 21 (5) ◽  
pp. 510-524 ◽  
Author(s):  
Nazar Poritskiy ◽  
Flávio Oliveira ◽  
Fernando Almeida
Keyword(s):  
Information Technology ◽  
Data Protection ◽  
The State ◽  
Quantitative Methodology ◽  
Content Type ◽  
General Data Protection Regulation ◽  
European Data ◽  
General Data ◽  
The Right ◽  
The Impact

PurposeThe implementation of European data protection is a challenge for businesses and has imposed legal, technical and organizational changes for companies. This study aims to explore the benefits and challenges that companies operating in the information technology (IT) sector have experienced in applying the European data protection. Additionally, this study aims to explore whether the benefits and challenges faced by these companies were different considering their dimension and the state of implementation of the regulation.Design/methodology/approachThis study adopts a quantitative methodology, based on a survey conducted with Portuguese IT companies. The survey is composed of 30 questions divided into three sections, namely, control data; assessment; and benefits and challenges. The survey was created on Google Drive and distributed among Portuguese IT companies between March and April of 2019. The data were analyzed using the Stata software using descriptive and inferential analysis techniques using the ANOVA one-way test.FindingsA total of 286 responses were received. The main benefits identified by the application of European data protection include increased confidence and legal clarification. On the other hand, the main challenges include the execution of audits to systems and processes and the application of the right to erasure. The findings allow us to conclude that the state of implementation of the general data protection regulation (GDPR), and the type of company are discriminating factors in the perception of benefits and challenges.Research limitations/implicationsThis study has essentially practical implications. Based on the synthesis of the benefits and challenges posed by the adoption of European data protection, it is possible to assess the relative importance and impact of the benefits and challenges faced by companies in the IT sector. However, this study does not explore the type of challenges that are placed at each stage of the adoption of European data protection and does not take into account the specificities of the activities carried out by each of these companies.Originality/valueThe implementation of the GDPR is still in an initial phase. This study is pioneering in synthesizing the main benefits and challenges of its adoption considering the companies operating in the IT sector. Furthermore, this study explores the impact of the size of the company and the status of implementation of the GDPR on the perception of the established benefits and challenges.

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