The Ethics of Biomedical Big Data, 1st ed. 2016 Law, Governance and Technology Series, Vol. 29

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 bookadvances 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 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.

Brent Mittelstadt is a Postdoctoral Research Fellow at the Oxford Internet Institute, University of Oxford.  Since 2014 he has held a Junior Research Fellowship with St. Cross College.  His current work examines the ethics of learning algorithms as used in personal data analytics. Prior to this he worked on the ‘Ethics of Biomedical Big Data’ project wirt Prof. Luciani Floridi to map the ethical landscape surrounding mining and sharing of biomedical and health-related ‘Big Data’ across research and commercial institutions. He has also conducted ethical foresight of emerging medical information and communication technologies, including personal health monitoring devices and ‘smart’ environments designed to support dementia care and ‘ageing at home’.  His research falls broadly within the philosophy and ethics of information, computer ethics and medical ethics.

Luciano Floridi is Professor of Philosophy and Ethics of Information at the University of Oxford, where he is the Director of Research and Senior Research Fellow of the Oxford Internet Institute, Governing Body Fellow of St Cross College, Distinguished Research Fellow of the Uehiro Centre for Practical Ethics, Faculty of Philosophy, and Research Associate and Fellow in Information Policy of the Department of Computer Science.