The Ethics of Medical Data Donation

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Cover of 'The Ethics of Medical Data Donation'

Table of Contents

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Book Overview
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Chapter 1 Ethical Medical Data Donation: A Pressing Issue
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Chapter 2 Data Donation: How to Resist the iLeviathan
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Chapter 3 Data Donations as Exercises of Sovereignty
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Chapter 4 The Ethics of Uncertainty for Data Subjects
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Chapter 5 Incongruities and Dilemmas in Data Donation: Juggling Our 1s and 0s
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Chapter 6 Posthumous Medical Data Donation: The Case for a Legal Framework
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Chapter 7 Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use
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Chapter 8 The Personal Data Is Political
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Chapter 9 Personal Data Cooperatives – A New Data Governance Framework for Data Donations and Precision Health
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Chapter 10 Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent
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Chapter 11 Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data
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Chapter 12 An Ethical Code for Posthumous Medical Data Donation

Attention for Chapter 2: Data Donation: How to Resist the iLeviathan

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Information science and the inevitable: A literature review at the intersection of death and information management: An Annual Review of Information Science and Technology (ARIST) paper

Article in Journal of the Association for Information Science and Technology (December 2023)

Ethical Data Collection for Medical Image Analysis: a Structured Approach

Article in Asian Bioethics Review (April 2023)

An Overview of the Secondary Use of Health Data Within the European Union: EU-Driven Possibilities and Civil Society Initiatives

Book chapter (October 2022)

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