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 book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward.
Arvustused
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)
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.- Whats
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.
