The Ethics of Biomedical Big Data

1. Front Matter

   Pages i-xvi

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2. Introduction

   • Brent Daniel Mittelstadt, Luciano Floridi

   Pages 1-13

3. Balancing Individual and Collective Interests

   1. Front Matter

      Pages 15-15

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   2. “Strictly Biomedical? Sketching the Ethics of the Big Data Ecosystem in Biomedicine”

      • Effy Vayena, Urs Gasser

      Pages 17-39

   3. Using Transactional Big Data for Epidemiological Surveillance: Google Flu Trends and Ethical Implications of ‘Infodemiology’

      • Annika Richterich

      Pages 41-72

   4. Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country

      • Klaus Hoeyer

      Pages 73-93

   5. A Critical Examination of Policy-Developments in Information Governance and the Biosciences

      • Edward Hockings

      Pages 95-115

4. Privacy and Data Protection

   1. Front Matter

      Pages 117-117

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   2. 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, Paul De Hert

      Pages 119-137

   3. What’s Wrong with the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics

      • Bryce Goodman

      Pages 139-167

5. Consent

   1. Front Matter

      Pages 169-169

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   2. How Data Are Transforming the Landscape of Biomedical Ethics: The Need for ELSI Metadata on Consent

      • J. Patrick Woolley

      Pages 171-197

   3. 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

      Pages 199-218

6. Ethical Governance

   1. Front Matter

      Pages 219-219

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   2. Big Data Governance: Solidarity and the Patient Voice

      • Simon Woods

      Pages 221-238

   3. Premises for Clinical Genetics Data Governance: Grappling with Diverse Value Logics

      • Polyxeni Vassilakopoulou, Espen Skorve, Margunn Aanestad

      Pages 239-256

   4. State Responsibility and Accountability in Managing Big Data in Biobank Research: Tensions and Challenges in the Right of Access to Data

      • Aaro Tupasela, Sandra Liede

      Pages 257-275

   5. Big Data, Small Talk: Lessons from the Ethical Practices of Interpersonal Communication for the Management of Biomedical Big Data

      • Paula Boddington

      Pages 277-305

7. Professionalism and Ethical Duties

   1. Front Matter

      Pages 307-307

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   2. Researchers’ Duty to Share Pre-publication Data: From the Prima Facie Duty to Practice

      • Christoph Schickhardt, Nelson Hosley, Eva C. Winkler

      Pages 309-337

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.

• Big Governance
• Biological Samples
• Ethico-sociological landscapes
• Ethics of Biomedical Big Data
• Information Carriers
• Intensified Data Sourcing
• Mental health research
• Use of electronic health records

“This substantial volume is a result of discussions about emerging types of data and their ethical, legal and social implications (ELSIs) in the biomedical sphere. … The book does, in separate chapters, give an interesting contemporary framing to ethical concerns which the attentive reader will appreciate. … the landscape is moving fast and this is now mostly a descriptive and theoretical text for bioethicists.” (Thomas King, Journal of the Royal Statistical Society A, May 23, 2019)

• Oxford Internet Institute, University of Oxford, Oxford, United Kingdom

  Brent Daniel Mittelstadt, 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.

Policies and ethics