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Table of contents

  1. Front Matter
    Pages i-x
  2. Jenny Krutzinna, Luciano Floridi
    Pages 1-6 Open Access
  3. Conceptualising the Ethics of Medical Data Donation

    1. Front Matter
      Pages 7-7
    2. Barbara Prainsack
      Pages 9-22 Open Access
    3. Patrik Hummel, Matthias Braun, Peter Dabrock
      Pages 23-54 Open Access
    4. Philip J. Nickel
      Pages 55-74 Open Access
  4. Governance and Regulation of Medical Data Donation

  5. Implementing Ethical Medical Data Donation

    1. Front Matter
      Pages 131-131
    2. Bastian Greshake Tzovaras, Athina Tzovara
      Pages 133-140 Open Access
  6. An Ethical Code for Posthumous Medical Data Donation

    1. Front Matter
      Pages 161-161
    2. Jenny Krutzinna, Mariarosaria Taddeo, Luciano Floridi
      Pages 163-180 Open Access
    3. Jenny Krutzinna, Mariarosaria Taddeo, Luciano Floridi
      Pages 181-195 Open Access
  7. Back Matter
    Pages 197-198

About this book

Introduction

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

Editors and affiliations

  • Jenny Krutzinna
    • 1
  • Luciano Floridi
    • 2
  1. 1.Department of Administration and Organization TheoryUniversity of BergenBergenNorway
  2. 2.Oxford Internet Institute, University of Oxford, Oxford, UKThe Alan Turing InstituteLondonUK

Bibliographic information

  • DOI https://doi.org/10.1007/978-3-030-04363-6
  • Copyright Information The Editor(s) (if applicable) and The Author(s) 2019
  • License CC BY
  • Publisher Name Springer, Cham
  • eBook Packages Medicine
  • Print ISBN 978-3-030-04362-9
  • Online ISBN 978-3-030-04363-6
  • Series Print ISSN 0921-8599
  • Series Online ISSN 2542-8349
  • Buy this book on publisher's site