The Ethics of Biomedical Big Data

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 Interests in Biobanking and Genomic Research; Dara Hallinan and Paul De Hert.- What's Wrong With the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics; Bryce Goodman.- Section Three: Consent.- How Data are Transforming the Landscape of Biomedical Ethics: The Need for Elsi Metadata on Consent; J. Patrick Woolley.- 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.- Section Four: Ethical Governance.- Big Data Governance: Solidarity and the Patient Voice; Simon Woods.- Premises for Clinical Genetics Data Governance: Grappling With Diverse Value Logics; Polyxeni Vassilakopoulou, Espen Skorve, Margunn Aanestad.- 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.- Big Data, Small Talk: Lessons From the Ethical Practices of Interpersonal Communication for the Management of Biomedical Big Data; Paula Boddington.- Section Five: Professionalism and Ethical Duties.- Researchers' Duty to Share Pre-Publication Data: From the Prima Facie Duty to Practice; Christoph Schickhardt, Nelson Hosley, Eva C. Winkler.- Reporting and Transparency in Big Data: The Nexus of Ethics and Methodology; Stuart G Nicholls, Sinéad M. Langan, Eric I. Benchimol.- Creating a Culture of Ethics in Biomedical Big Data: Adapting 'Guidelines for Professional Practice' to Promote Ethical Use and Research Practice; Rochelle E. Tractenberg.- Section Six: Foresight.- The Ethics and Politics of Infrastructures: Creating the Conditions of Possibility for Big Data in Medicine; Linda F. Hogle.- Ethical Reuse of Data From Health Care: Data, Persons and Interests; Pete Mills.- The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts; Brent Daniel Mittelstadt and Luciano Floridi.