The Ethics of Biomedical Big Data

<p>Contributors.-&nbsp;Introduction.-&nbsp;Section One: Balancing Individual and Collective Interests.-&nbsp;“Strictly Biomedical? Sketching the Ethics of the Big Data Ecosystem in Biomedicine”; Effy Vayena and Urs Gasser.-&nbsp;Using Transactional Big Data for Epidemiological Surveillance: Google Flu Trends and Ethical Implications of ‘Infodemiology’; Annika Richterich.-&nbsp;Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country; Klaus Hoeyer.-&nbsp;A Critical Examination of Policy-Developments in Information Governance and the Biosciences; Edward Hockings.-&nbsp;Section Two: Privacy and Data Protection.-&nbsp;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; Dara Hallinan and Paul De Hert.-&nbsp;What’s Wrong With the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics; Bryce Goodman.-&nbsp;Section Three:Consent.-&nbsp;How Data are Transforming the Landscape of Biomedical Ethics: The Need for Elsi Metadata on Consent; &nbsp;J. Patrick Woolley.-&nbsp;On the Compatibility of Big Data Driven Research and Informed Consent – The Example of the Human Brain Project; Markus Christen, Josep Domingo-Ferrer, Bogdan Draganski, Tade Spranger, Henrik Walter.-&nbsp;Section Four: Ethical Governance.-&nbsp;Big Data Governance: Solidarity and the Patient Voice; Simon Woods.-&nbsp;Premises for Clinical Genetics Data Governance: Grappling With Diverse Value Logics; Polyxeni Vassilakopoulou, Espen Skorve, Margunn Aanestad.-&nbsp;State Responsibility and Accountability in Managing Big Data in Biobank Research - Tensions and Challenges in the Right of Access to Data; Aaro Tupasela and Sandra Liede.-&nbsp;Big Data, Small Talk: Lessons From the Ethical Practices of Interpersonal Communication for the Management of Biomedical Big Data; Paula Boddington.-&nbsp;Section Five: Professionalism and Ethical Duties.-&nbsp;Researchers’ Duty to Share Pre-Publication Data: From the Prima Facie Duty to Practice; Christoph Schickhardt, Nelson Hosley, Eva C. Winkler.-&nbsp;Reporting and Transparency in Big Data: The Nexus of Ethics and Methodology; Stuart G Nicholls, Sinéad M. Langan, Eric I. Benchimol.-&nbsp;Creating a Culture of Ethics in Biomedical Big Data: Adapting ‘Guidelines for Professional Practice’ to Promote Ethical Use and Research Practice; Rochelle E. Tractenberg.-&nbsp;Section Six: Foresight.-&nbsp;The Ethics and Politics of Infrastructures: Creating the Conditions of Possibility for Big Data in Medicine; &nbsp;Linda F. Hogle.-&nbsp;Ethical Reuse of Data From Health Care: Data, Persons and Interests; Pete Mills.-&nbsp;The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts; Brent Daniel Mittelstadt and Luciano Floridi.</p><p></p>