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E-raamat: Ethics of Biomedical Big Data

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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.

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)

Introduction 1(16)
Brent Daniel Mittelstadt
Luciano Floridi
Part I Balancing Individual and Collective Interests
"Strictly Biomedical? Sketching the Ethics of the Big Data Ecosystem in Biomedicine"
17(24)
Effy Vayena
Urs Gasser
Using Transactional Big Data for Epidemiological Surveillance: Google Flu Trends and Ethical Implications of `Infodemiology'
41(32)
Annika Richterich
Denmark at a Crossroad? Intensified Data Sourcing in a Research Radical Country
73(22)
Klaus Hoeyer
A Critical Examination of Policy-Developments in Information Governance and the Biosciences
95(24)
Edward Hockings
Part II 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
119(20)
Dara Hallinan
Paul De Hert
What's Wrong with the Right to Genetic Privacy: Beyond Exceptionalism, Parochialism and Adventitious Ethics
139(32)
Bryce Goodman
Part III Consent
How Data Are Transforming the Landscape of Biomedical Ethics: The Need for ELSI Metadata on Consent
171(28)
J. Patrick Woolley
On the Compatibility of Big Data Driven Research and Informed Consent: The Example of the Human Brain Project
199(22)
Markus Christen
Josep Domingo-Ferrer
Bogdan Draganski
Tade Spranger
Henrik Walter
Part IV Ethical Governance
Big Data Governance: Solidarity and the Patient Voice
221(18)
Simon Woods
Premises for Clinical Genetics Data Governance: Grappling with Diverse Value Logics
239(18)
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
257(20)
Aaro Tupasela
Sandra Liede
Big Data, Small Talk: Lessons from the Ethical Practices of Interpersonal Communication for the Management of Biomedical Big Data
277(32)
Paula Boddington
Part V Professionalism and Ethical Duties
Researchers' Duty to Share Pre-publication Data: From the Prima Facie Duty to Practice
309(30)
Christoph Schickhardt
Nelson Hosley
Eva C. Winkler
Reporting and Transparency in Big Data: The Nexus of Ethics and Methodology
339(28)
Stuart G. Nicholls
Sinead 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
367(30)
Rochelle E. Tractenberg
Part VI Foresight
The Ethics and Politics of Infrastructures: Creating the Conditions of Possibility for Big Data in Medicine
397(32)
Linda F. Hogle
Ethical Reuse of Data from Health Care: Data, Persons and Interests
429(16)
Peter Mills
The Ethics of Big Data: Current and Foreseeable Issues in Biomedical Contexts
445
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.