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The ethics of biomedical big data

Author: Brent Daniel Mittelstadt; Luciano Floridi
Publisher: Switzerland : Springer, [2016]
Series: Law, governance and technology series, v. 29.
Edition/Format:   eBook : Document : English
Database:WorldCat
Summary:
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,  Read more...
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Genre/Form: Electronic books
Material Type: Document, Internet resource
Document Type: Internet Resource, Computer File
All Authors / Contributors: Brent Daniel Mittelstadt; Luciano Floridi
ISBN: 9783319335254 3319335251
OCLC Number: 956319295
Description: 1 online resource.
Contents: Contributors; Introduction; 1 Background; 2 Big Data; 3 Biomedical Big Data; 4 Structure of the Volume; 4.1 Part I: Balancing Individual and Collective Interests; 4.2 Part II: Privacy and Data Protection; 4.3 Part III: Consent; 4.4 Part IV: Ethical Governance; 4.5 Part V: Professionalism and Ethical Duties; 4.6 Part VI: Foresight; References; Part I Balancing Individual and Collective Interests; "Strictly Biomedical? Sketching the Ethics of the Big Data Ecosystem in Biomedicine"; 1 The Chiaroscuro Portrait of Big Data; 2 Typical Big Biomedical Data 3 Non-biomedical Big Data of Great Biomedical Value3.1 Loyalty Cards Points; 3.2 Social Media; 3.3 Mobile Devices; 4 The Digital Phenotype; 5 Towards a New Ethical Framework; 5.1 Vision for a New Framework; 5.2 Design Requirements; 5.3 Substantive Key Elements; 5.3.1 (1) Ethical Use and Privacy; 5.3.2 (2) Data Governance; 5.3.3 (3) Transparency and Accountability; 6 Conclusion; References; Using Transactional Big Data for Epidemiological Surveillance: Google Flu Trends and Ethical Implications of `Infodemiology'; 1 Introduction; 2 A Pragmatist Approach to Ethics; 3 Historical Overview 3.1 Infodemiology: Covering `Supply' and `Demand'3.2 Analysing Health Information Demand; 4 Case Study: Google Flu Trends; 4.1 Normative Assumptions, Justifications and Values; 4.1.1 Epidemics of Fear; 4.1.2 The `Innocent User' as Ideal Data Source; 4.1.3 Privacy; 4.2 Discourse Ethics; 4.2.1 Institutional Context; 4.2.2 Stakeholder Analysis; 5 Conclusion; References; Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country; 1 Introduction; 2 From Data Mining to Intensified Data Sourcing; 3 Denmark: A Country at a Crossroad; 3.1 The Register Infrastructure 3.2 The Lenient Legal System3.3 Initiatives to Facilitate Research; 3.4 Conflicts About Data Sourcing and Initiatives to Limit Data Availability; 4 Ethical Debates and Their Limitations; 4.1 The Individual and the Population; 4.2 Why Focus on Research Uses of Data?; 5 Concluding Remarks; References; A Critical Examination of Policy-Developments in Information Governance and the Biosciences; 1 Introduction; 2 Policy Developments: An Overview; 2.1 Legislative Changes; 3 The Changing Landscape of Information Governance; 4 The `Value Impact' of Genomics; 5 Changing Perspectives 6 The Locking-in of the Economic Paradigm in the Biosciences7 Reflexivity; 8 Democratic Deficit and the Conditions for Meaningful Public Discourse; 8.1 Societal Tendencies and the Normative Grounds of a Deliberative Approach; 8.2 A Clarification of the Risks; 9 New Powers and Novel Challenges; 10 Conclusion; References; Part II Privacy and Data Protection; Many Have It Wrong --
Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research; 1 Introduction; 1.1 The Genomic Research Process: Four Stages
Series Title: Law, governance and technology series, v. 29.
Responsibility: Brent Daniel Mittelstadt, Luciano Floridi, editors.
More information:

Abstract:

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.

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