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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
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