The Ethics of Medical Data Donation

Description

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. Front Matter ....Pages i-x Ethical Medical Data Donation: A Pressing Issue (Jenny Krutzinna, Luciano Floridi)....Pages 1-6 Front Matter ....Pages 7-7 Data Donation: How to Resist the iLeviathan (Barbara Prainsack)....Pages 9-22 Data Donations as Exercises of Sovereignty (Patrik Hummel, Matthias Braun, Peter Dabrock)....Pages 23-54 The Ethics of Uncertainty for Data Subjects (Philip J. Nickel)....Pages 55-74 Incongruities and Dilemmas in Data Donation: Juggling Our 1s and 0s (Kerina H. Jones)....Pages 75-93 Front Matter ....Pages 95-95 Posthumous Medical Data Donation: The Case for a Legal Framework (Edina Harbinja)....Pages 97-113 Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use (Annie Sorbie)....Pages 115-130 Front Matter ....Pages 131-131 The Personal Data Is Political (Bastian Greshake Tzovaras, Athina Tzovara)....Pages 133-140 Personal Data Cooperatives – A New Data Governance Framework for Data Donations and Precision Health (Ernst Hafen)....Pages 141-149 Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent (David M. Shaw)....Pages 151-159 Front Matter ....Pages 161-161 Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data (Jenny Krutzinna, Mariarosaria Taddeo, Luciano Floridi)....Pages 163-180 An Ethical Code for Posthumous Medical Data Donation (Jenny Krutzinna, Mariarosaria Taddeo, Luciano Floridi)....Pages 181-195 Back Matter ....Pages 197-198