The Ethics of Biomedical Big Data [Hardcover]

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.

Contributors.- Introduction.- Section One: Balancing Individual and Collective Interests.- Strictly Biomedical? Sketching the Ethics of the Big Data Ecosystem in Biomedicine; Effy Vayena and Urs Gasser.- Using Transactional Big Data for Epidemiological Surveillance: Google Flu Trends and Ethical Implications of Infodemiology; Annika Richterich.- Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country; Klaus Hoeyer.- A Critical Examination of Policy-Developments in Information Governance and the Biosciences; Edward Hockings.- Section Two: Privacy and Data Protection.- Many Have it Wrong  Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor InterlS5