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Protecting Genetic Privacy in Biobanking Through Data Protection Law
Hallinan argues that the substantive framework presented by the GDPR offers an admirable base-line level of protection for the range of genetic privacy rights engaged by biobanking.
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...
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...
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. .
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...
Confidentiality, Privacy, and Data Protection in Biomedicine
Featuring contributions from leading scholars of health privacy law, this important volume offers insightful reflection on issues such as confidentiality, privacy, and data protection, as well as analysis in how a range of jurisdictions—including the US, the UK, Europe, South Africa, and Australia—navigate a rapidly developing biomedical environment. While the collection of personal health information offers the potential to drive research and innovation, it also generates complex legal and ethical questions in how this information is used to ensure the rights and interests of individuals and communities are respected. But in many ways laws have struggled to keep pace with technological ...
Russia and European Human-Rights Law
In Russia and European Human-Rights Law: The Rise of the Civilizational Argument, Lauri Mälksoo and his co-authors critically examine Russia's experiences as part of the European human-rights protection system since its admittance to the Council of Europe in 1998. The authors combine legal and constructivist international-relations theory perspectives in studying Russia's practice and rhetoric as a member of the Council of Europe and a subject to the jurisdiction of the European Court of Human Rights. Certain aspects of human-rights doctrine and practice in Russia are particularly highlighted: the increasing impact of Orthodox Christian teachings on the Russian government's ideology, the situation with media freedom, freedom of religion, etc. The authors draw widely on Russian sources and media. The questions whether modern-day Russia truly fits in the human-rights protection system of the Council of Europe, and whether a margin of appreciation will suffice when dealing with Moscow, are highly relevant in contemporary European politics.
Data Protection Law and Emotion
Data protection law is often positioned as a regulatory solution to the risks posed by computational systems. Despite the widespread adoption of data protection laws, however, there are those who remain sceptical as to their capacity to engender change. Much of this criticism focuses on our role as 'data subjects'. It has been demonstrated repeatedly that we lack the capacity to act in our own best interests and, what is more, that our decisions have negative impacts on others. Our decision-making limitations seem to be the inevitable by-product of the technological, social, and economic reality. Data protection law bakes in these limitations by providing frameworks for notions such as conse...
