GDPR and Biobanking
Individual Rights, Public Interest and Research Regulation across Europe
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Chapter
Introduction
The General Data Protection Regulation (GDPR) is already four years old legal instrument, with over two years of practical experience, yet, several central questions on its application, its importance in scien...
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Chapter
Swedish Law on Personal Data in Biobank Research: Permissible But Complex
This chapter describes the regulatory and organisational infrastructure of biobank research in Sweden, and how the introduction of the GDPR affects the possibilities to use biobank material in future research....
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Chapter
Allocation of Regulatory Responsibilities: Who Will Balance Individual Rights, the Public Interest and Biobank Research Under the GDPR?
In this chapter, an analysis is undertaken of the division of legislative power in the space created by the GDPR, regarding the balancing of individual rights, the public interest and biobank research. The leg...
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Chapter
Biobanking Across Europe Post-GDPR: A Deliberately Fragmented Landscape
This chapter seeks to provide insight into the ways in which Member States leveraged the regulatory discretion afforded to them by the GDPR. Specifically, it reviews the biobank regulatory environment; whether...
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Book
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Chapter
Sanctions Against Individuals and the Rule of Law: Can the Member States Let the EU Decide?
This chapter takes the question of how to guarantee the rule of law within the scope of application of Union law. The rule of law in this context requires, according to the author, that the exercise of public ...
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Article
Open AccessOversight of EU medical data transfers – an administrative law perspective on cross-border biomedical research administration
The notion of privacy has long had a central role in human rights law, not least in connection to health and medicine. International, regional and national bodies have enacted a number of binding and non-bindi...
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Chapter and Conference Paper
BiobankCloud: A Platform for the Secure Storage, Sharing, and Processing of Large Biomedical Data Sets
Biobanks store and catalog human biological material that is increasingly being digitized using next-generation sequencing (NGS). There is, however, a computational bottleneck, as existing software systems are...
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Chapter
The New General Data Protection Regulation—Where Are We Are and Where Might We Be Heading?
The current EU Directive on Data Protection, has been described as the most far reaching Data Protection regime in the world. Still, the ongoing work within the EU to enact a new General Data Protection Regula...
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Chapter
EU Governance for Research and Ethics in Biobanks
In this paper the new governance tool for research developed within the EU, the European Research Infrastructure Consortium, ERIC, will be studied. One specific research infrastructure is put in focus, the Bio...
