The Ethics of Medical Data Donation

The Ethics of Medical Data Donation

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...

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Bibliographic Details
Other Authors: Krutzinna, Jenny (Editor), Krutzinna, Jenny. editor (editor), Floridi, Luciano. editor
Format: eBook
Language:Inglés
Published: Cham : Springer International Publishing 2019.
Edition:1st ed. 2019.
Series:Philosophical Studies Series, 137
Subjects:
Medical policy.
Social policy.
Technology > Philosophy.
Health Policy.
Social Policy.
Philosophy of Technology.
See on Biblioteca Universitat Ramon Llull:https://discovery.url.edu/permalink/34CSUC_URL/1im36ta/alma991009430448906719
Table of Contents:
  • Chapter 1. Introduction (Jenny Krutzinna and Luciano Floridi)
  • Part I: Conceptualising the Ethics of Medical Data Donation
  • Chapter 2. Data Donation: How to Resist the iLeviathan (Barbara Prainsack)
  • Chapter 3. Data Donations as Exercises of Sovereignty (Patrik Hummel, Matthias Braun and Peter Dabrock)
  • Chapter 4. The Ethics of Uncertainty for Data Subjects (Philip J. Nickel)
  • Chapter 5. Incongruities and Dilemmas in Data Donation: Juggling our 1s and 0s (Kerina H. Jones)
  • Part II: Governance and Regulation of Medical Data Donation
  • Chapter 6. Posthumous Medical Data Donation: The Case for a Regulatory Framework (Edina Harbinja)
  • Chapter 7. Medical Data Donation, Consent and the Public Interest after Death: A Gateway to Posthumous Data Use (Annie Sorbie)
  • Part III: Implementing Ethical Medical Data Donation
  • Chapter 8. The Personal Data is Political (Bastian Greshake Tzovaras and Athina Tzovara)
  • Chapter 9. Personal Data Cooperatives – A New Data Governance Framework for Data Donations and Precision Health (Ernst Hafen)
  • Chapter 10. Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Road to Big Consent (David M. Shaw)
  • Part IV: An Ethical Code for Posthumous Medical Data Donation
  • Chapter 11. Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi)
  • Chapter 12. An Ethical Code for Posthumous Medical Data Donation (Jenny Krutzinna, Mariarosaria Taddeo and Luciano Floridi). .

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