Data protection as a fundamental right next to privacy? 'Reconstructing' a not so new right

Tzanou, Maria

doi:10.1093/idpl/ipt004

Cited by 32 publications

(11 citation statements)

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“…Privacy is extremely difficult to define (Alfino & Mayes, 2003), and may be understood in this context as a state of non-access to data pertaining to an individual (Dove, 2018). Data protection, in turn, is a less ambiguous definition and can be understood as a set of rules that aim to protect the rights, freedoms, and interests of individuals whose personal data are handled and used (Tzanou, 2013).…”

Section: Data Sharing and Re-usementioning

confidence: 99%

Mega-Analysis Methods in ENIGMA: The Experience of the Generalized Anxiety Disorder Working Group

Zugman¹,

Harrewijn²,

Cardinale³

et al. 2020

Preprint

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The ENIGMA group on Generalized Anxiety Disorder (ENIGMA-Anxiety/GAD) is part of a broader effort to investigate anxiety disorders using imaging and genetic data across multiple sites worldwide. The group is actively conducting a mega-analysis of a large number of brain structural scans. In this process, the group was confronted with many methodological challenges related to study planning and implementation, between-country transfer of subject-level data, quality control of a considerable amount of imaging data, and choices related to statistical methods and efficient use of resources. This report summarizes the background information and rationale for the various methodological decisions, as well as the approach taken to implement them. The goal is to document the approach and help guide other research groups working with large brain imaging data sets as they develop their own analytic pipelines for mega-analyses.

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Section: Data Sharing and Re-usementioning

confidence: 99%

Mega-Analysis Methods in ENIGMA: The Experience of the Generalized Anxiety Disorder Working Group

Zugman¹,

Harrewijn²,

Cardinale³

et al. 2020

Preprint

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“…Personal data have been protected legally since the first negative impacts on individuals arose (Warren & Brandeis 1890). Consequently, processing of personal data is regulated and protection of personal data has become a fundamental right, either from a right‐to‐privacy perspective or as a separately formulated right to protection of personal data (Tzanou 2013). This means that when personal data are processed, it interferes with a fundamental right of a person and needs to be adequately protected and justified.…”

Section: Legal Foundations Of Using Social Media Datamentioning

confidence: 99%

How to address data privacy concerns when using social media data in conservation science

Minin

Fink

Hausmann

et al. 2021

Conservation Biology

107

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Social media data are being increasingly used in conservation science to study human-nature interactions. User-generated content, such as images, video, text, and audio, and the associated metadata can be used to assess such interactions. A number of social media platforms provide free access to user-generated social media content. However, similar to any research involving people, scientific investigations based on social media data require compliance with highest standards of data privacy and data protection, even when data are publicly available. Should social media data be misused, the risks to individual users' privacy and well-being can be substantial. We investigated the legal basis for using social media data while ensuring data subjects' rights through a case study based on the European Union's General Data Protection Regulation. The risks associated with using social media data in research include accidental and purposeful misidentification that has the potential to cause psychological or physical harm to an identified person. To collect, store, protect, share, and manage social media data in a way that prevents potential risks to users involved, one should minimize data, anonymize data, and follow strict data management procedure. Risk-based approaches, such as a data privacy impact assessment, can be used to identify and minimize privacy risks to social media users, to demonstrate accountability and to comply with data protection legislation. We recommend that conservation scientists carefully consider our recommendations in devising their research objectives so as to facilitate responsible use of social media data in conservation science research, for example, in conservation culturomics and investigations of illegal wildlife trade online.

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“…The definitive objective is to ensure fairness in the processing of data and, to some extent, fairness in the outcomes of such processing." 11 The aims of data protection, then, are broader than simply privacy protection, but at the same time, data protection is a crucial tool to ensure our privacy. 12…”

Section: Brief History and Nature Of Data Protection Law In Europementioning

confidence: 99%

“…Data protection is a “set of legal rules that aims to protect the rights, freedoms, and interests of individuals, whose personal data are collected, stored, processed, disseminated, destroyed, etc. The definitive objective is to ensure fairness in the processing of data and, to some extent, fairness in the outcomes of such processing.” 11 The aims of data protection, then, are broader than simply privacy protection, but at the same time, data protection is a crucial tool to ensure our privacy. 12…”

Section: Brief History and Nature Of Data Protection Law In Europementioning

confidence: 99%

The EU General Data Protection Regulation: Implications for International Scientific Research in the Digital Era

Dove

2018

J. Law. Med. Ethics

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processing sensitive data and processing data for scientific research purposes, including derogations from data subject rights afforded under the GDPR when personal data are processed for scientific research purposes; and lastly, 6) two other important considerations, namely the ability to re-use previously collected personal data for research purposes (i.e. secondary use), and international data transfers. This article stresses that the GDPR undeniably represents an improvement from the predecessor legislation-the 1995 EU Data Protection Directive 5-as it provides both greater regulatory certainty and flexibility for scientific research. At the same time, it remains to be seen whether the new rules will be implemented across Europe in a harmonized way that delivers the clarity and certainty it promises, for researchers and research participants alike. It also remains to be seen whether the new law contributes to fostering cross-European and international trust in organizations that make use of personal data. The GDPR provides a disconcerting degree of latitude for national and EU-level specification in several areas, including scientific research. Because of the many areas where EU Member States "shall" and "may" carve out exceptions within the articles of the Regulation, Member States may pass national GDPR implementation laws (examples include the still-EU Member State United Kingdom, which has passed and implemented its Data Protection Act 2018, replacing the Data Protection Act 1998). 6 There is thus a potential for national divergence and regulatory fragmentation, undermining the very purpose of an EU Regulation, as I explain below. Further steps are needed therefore to guide researchers and support staff; improve regulatory harmonization; address a culture of caution relating to regulatory compliance; and enhance responsible data sharing for the purpose of facilitating progress in scientific research and medical discovery. This article, in addition to providing an overview of the GDPR for the uninitiated as it relates to health research, also offers a modest way through some of these sticking points. Brief history and nature of data protection law in Europe The European context Data protection law has a long history in Europe and the continent's political and cultural contexts, such as secret police surveillance in East Germany, help explain a long tradition of citizens and governments alike seeking to craft a status of non-interference in individuals' private lives; indeed, the first modern data protection laws in the world were passed in the early 1970s in Germany (Hesse Data Protection Act in 1970) and Sweden (Data Act in 1973). Unlike in countries such as the US or Canada, where the starting presumption in law is that processing personal data is lawful unless it is expressly forbidden, in Europe, processing personal data is prohibited unless there is a lawful basis that permits it. Moreover, data protection law in Europe is "omnibus," which is to say that, subject to a few exceptions such as personal d...

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Data protection as a fundamental right next to privacy? 'Reconstructing' a not so new right

Cited by 32 publications

References 0 publications

Mega-Analysis Methods in ENIGMA: The Experience of the Generalized Anxiety Disorder Working Group

Mega-Analysis Methods in ENIGMA: The Experience of the Generalized Anxiety Disorder Working Group

How to address data privacy concerns when using social media data in conservation science

The EU General Data Protection Regulation: Implications for International Scientific Research in the Digital Era

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