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Protecting Genetic Privacy in Biobanking through Data Protection 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.
Data Protection and Privacy, Volume 12
The subjects of this volume are more relevant than ever, especially in light of the raft of electoral scandals concerning voter profiling. This volume brings together papers that offer conceptual analyses, highlight issues, propose solutions, and discuss practices regarding privacy and data protection. It is one of the results of the twelfth annual International Conference on Computers, Privacy and Data Protection, CPDP, held in Brussels in January 2019. The book explores the following topics: dataset nutrition labels, lifelogging and privacy by design, data protection iconography, the substance and essence of the right to data protection, public registers and data protection, modelling and ...
Data Protection and Privacy, Volume 14
This book brings together papers that offer conceptual analyses, highlight issues, propose solutions, and discuss practices regarding privacy, data protection and enforcing rights in a changing world. It is one of the results of the 14th annual International Conference on Computers, Privacy and Data Protection (CPDP), which took place online in January 2021. The pandemic has produced deep and ongoing changes in how, when, why, and the media through which, we interact. Many of these changes correspond to new approaches in the collection and use of our data - new in terms of scale, form, and purpose. This raises difficult questions as to which rights we have, and should have, in relation to su...
GDPR and Biobanking
Part I Setting the scene -- Introduction: Individual rights, the public interest and biobank research 4000 (8) -- Genetic data and privacy protection -- Part II GDPR and European responses -- Biobank governance and the impact of the GDPR on the regulation of biobank research -- Controller' and processor's responsibilities in biobank research under GDPR -- Individual rights in biobank research under GDPR -- Safeguards and derogations relating to processing for archiving purposes in the scientific purposes: Article 89 analysis for biobank research -- A Pan-European analysis of Article 89 implementation and national biobank research regulations -- EEA, Switzerland analysis of GDPR requirements and national biobank research regulations -- Part III National insights in biobank regulatory frameworks -- Selected 10-15 countries for reports: Germany -- Greece -- France -- Finland -- Sweden -- United Kingdom -- Part IV Conclusions -- Reflections on individual rights, the public interest and biobank research, ramifications and ways forward. .
Data Protection and Privacy, Volume 15
This book offers conceptual analyses, highlights issues, proposes solutions, and discusses practices regarding privacy and data protection in transitional times. It is one of the results of the 15th annual International Conference on Computers, Privacy and Data Protection (CPDP), which was held in Brussels in May 2022. We are in a time of transition. Artificial Intelligence is making significant breakthroughs in how humans use data and information, and is changing our lives in virtually all aspects. The pandemic has pushed society to adopt changes in how, when, why, and the media through which, we interact. A new generation of European digital regulations - such as the AI Act, Digital Servic...
Group Privacy
The goal of the book is to present the latest research on the new challenges of data technologies. It will offer an overview of the social, ethical and legal problems posed by group profiling, big data and predictive analysis and of the different approaches and methods that can be used to address them. In doing so, it will help the reader to gain a better grasp of the ethical and legal conundrums posed by group profiling. The volume first maps the current and emerging uses of new data technologies and clarifies the promises and dangers of group profiling in real life situations. It then balances this with an analysis of how far the current legal paradigm grants group rights to privacy and data protection, and discusses possible routes to addressing these problems. Finally, an afterword gathers the conclusions reached by the different authors and discuss future perspectives on regulating new data technologies.
The Ethics of Biomedical Big Data
This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. ‘Biomedical Big Data’ refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward.
Surveillance in Europe
Surveillance in Europe is an accessible, definitive and comprehensive overview of the rapidly growing multi-disciplinary field of surveillance studies in Europe. Written by experts in the field, including leading scholars, the Companion’s clear and up to date style will appeal to a wide range of scholars and students in the social sciences, arts and humanities. This book makes the case for greater resilience in European society in the face of the growing pervasiveness of surveillance. It examines surveillance in Europe from several different perspectives, including: the co-evolution of surveillance technologies and practices the surveillance industry in Europe the instrumentality of survei...
Research Handbook on EU Data Protection Law
Bringing together leading European scholars, this thought-provoking Research Handbook provides a state-of-the-art overview of the scope of research and current thinking in the area of European data protection. Offering critical insights on prominent strands of research, it examines key challenges and potential solutions in the field. Chapters explore the fundamental right to personal data protection, government-to-business data sharing, data protection as performance-based regulation, privacy and marketing in data-driven business models, data protection and judicial automation, and the role of consent in an algorithmic society.
