Protecting Genetic Privacy in Biobanking through Data Protection Law

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Dara Hallinan (Senior Researcher, Senior Researcher, FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur)

Protecting Genetic Privacy in Biobanking through Data Protection Law

Dara Hallinan (Senior Researcher, Senior Researcher, FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur)

$242

Hardback

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English

Oxford University Press
11 March 2021

Data protection law; Medical & healthcare law

Biobanks are critical infrastructure for medical research but they 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 25th 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 in Europe. Hallinan argues that the substantive framework presented by the GDPR already offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking. The book further argues that, whilst 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.

By: Dara Hallinan (Senior Researcher Senior Researcher FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur)
Imprint: Oxford University Press
Country of Publication: United Kingdom
Edition: 1
Dimensions: Height: 253mm, Width: 80mm, Spine: 23mm
Weight: 692g
ISBN: 9780192896476
ISBN 10: 0192896474
Pages: 304
Publication Date: 11 March 2021
Audience: Professional and scholarly , Undergraduate
Format: Hardback
Publisher's Status: Active

1: Introduction 2: Genetic Data, Genome Understanding, and Socially Relevant Information 3: The Context and State of the Art in European Biobanking 4: Genetic Privacy and Other Interests in Biobanking: Conflict and confluence 5: The Protection of Genetic Privacy in Biobanking at International Level: Establishing a base-line standard for genetic privacy protection in biobanking 6: Do we Need Data Protection at All? Evaluating protection for genetic privacy in biobanking in Europe excluding data protection 7: Testing the GDPR in Relation to Biobanking: When does the GDPR apply to biobanking? 8: Testing the GDPR in Relation to Biobanking: How does the GDPR classify the biobanking process? 9: Testing the GDPR in Relation to Biobanking: How do the GDPR's substantive provisions apply to biobanking? 10: A Critical Analysis of the Efficacy of the GDPR as a Framework for the Protection of Genetic Privacy in Biobanking 11: Conclusion

Dara Hallinan is a Senior Researcher working at FIZ Karlsruhe. His specific focus is on the interaction law, new technologies - particularly ICT and biotech - and society. He studied law in the UK and Germany, completed a Master's in Human Rights and Democracy in Italy and Estonia and wrote his PhD at the Vrije Universiteit Brussel in Belgium on data protection law, genetic privacy and research biobanking.

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Protecting Genetic Privacy in Biobanking through Data Protection Law

Dara Hallinan (Senior Researcher, Senior Researcher, FIZ Karlsruhe - Leibniz-Institut für Informationsinfrastruktur)

$242

Hardback

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