Editors:
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
Part of the book series: Philosophical Studies Series (PSSP, volume 137)
Buying options
Table of contents (12 chapters)
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Front Matter
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Conceptualising the Ethics of Medical Data Donation
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Front Matter
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Governance and Regulation of Medical Data Donation
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Front Matter
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An Ethical Code for Posthumous Medical Data Donation
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Front Matter
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Back Matter
About this book
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.Keywords
- Biomedical Big Data
- Data Philanthropy
- GDPR Health Care
- GDPR Medicine
- Medical Data Donation
- Medical Data Ethics
- Medical Data Sharing
- Philosophy of Information
- Privacy Health Care
- Privacy Medicine
- Open Access
Reviews
Editors and Affiliations
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Department of Administration and Organization Theory, University of Bergen, Bergen, Norway
Jenny Krutzinna
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Oxford Internet Institute, University of Oxford, Oxford, UK, The Alan Turing Institute, London, UK
Luciano Floridi
About the editors
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.
Bibliographic Information
Book Title: The Ethics of Medical Data Donation
Editors: Jenny Krutzinna, Luciano Floridi
Series Title: Philosophical Studies Series
DOI: https://doi.org/10.1007/978-3-030-04363-6
Publisher: Springer Cham
eBook Packages: Medicine, Medicine (R0)
Copyright Information: The Editor(s) (if applicable) and The Author(s) 2019
License: CC BY
Hardcover ISBN: 978-3-030-04362-9Published: 12 February 2019
eBook ISBN: 978-3-030-04363-6Published: 16 January 2019
Series ISSN: 0921-8599
Series E-ISSN: 2542-8349
Edition Number: 1
Number of Pages: X, 198
Number of Illustrations: 1 b/w illustrations
Topics: Health Policy, Social Policy, Philosophy of Technology