Ethics of Medical Data Donation

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.

• 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 forData 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).

“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)