The Ethics of Medical Data Donation
Editors: Krutzinna, Jenny, Floridi, Luciano (Eds.)
Free Preview- This book is Open Access
- Presents an ethical approach to utilizing personal medical data
- Provides timely interdisciplinary research on biomedical big data
- Pioneers the concept of medical data donation
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- About this book
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This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes.
Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations.
Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes.
- About the authors
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Dr Jenny Krutzinna is a Postdoctoral Researcher at the Centre for Research on Discretion and Paternalism, Department of Administration and Organization Theory, University of Bergen, Norway. Previously, she was a Postdoctoral Researcher in the Ethics of Biomedical Big Data at the Digital Ethics Lab at the Oxford Internet Institute, University of Oxford, UK.
Dr Luciano Floridi is Professor of Philosophy and Ethics of Information at the University of Oxford, where he is also the Director of the Digital Ethics Lab of the Oxford Internet Institute. He is Turing Fellow and Chair of the Data Ethics Group of the Alan Turing Institute.
- Reviews
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“This book will be appreciated by interdisciplinary scholars and graduate students actively working to concretize the future of policy and ethics regarding data sharing in a globalized, information-based age. ... readers of various backgrounds will find this book to be a rich and useful exploration ... . The book is an accessible, useful, and engaging first step in one of the frontiers of interdisciplinary research.” (Alec Arnold, Doody's Book Reviews, December 7, 2019)
- Table of contents (12 chapters)
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Ethical Medical Data Donation: A Pressing Issue
Pages 1-6
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Data Donation: How to Resist the iLeviathan
Pages 9-22
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Data Donations as Exercises of Sovereignty
Pages 23-54
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The Ethics of Uncertainty for Data Subjects
Pages 55-74
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Incongruities and Dilemmas in Data Donation: Juggling Our 1s and 0s
Pages 75-93
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Table of contents (12 chapters)
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Bibliographic Information
- Bibliographic Information
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- Book Title
- The Ethics of Medical Data Donation
- Editors
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- Jenny Krutzinna
- Luciano Floridi
- Series Title
- Philosophical Studies Series
- Series Volume
- 137
- Copyright
- 2019
- Publisher
- Springer International Publishing
- Copyright Holder
- The Editor(s) (if applicable) and The Author(s)
- eBook ISBN
- 978-3-030-04363-6
- DOI
- 10.1007/978-3-030-04363-6
- Hardcover ISBN
- 978-3-030-04362-9
- Series ISSN
- 0921-8599
- Edition Number
- 1
- Number of Pages
- X, 198
- Number of Illustrations
- 1 b/w illustrations
- Topics
