The Ethics of Medical Data Donation.
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| Superior document: | Philosophical Studies Series ; v.137 |
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| TeilnehmendeR: | |
| Place / Publishing House: | Cham : : Springer International Publishing AG,, 2019. ©2019. |
| Year of Publication: | 2019 |
| Edition: | 1st ed. |
| Language: | English |
| Series: | Philosophical Studies Series
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| Online Access: | |
| Physical Description: | 1 online resource (199 pages) |
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Table of Contents:
- Intro
- Preface and Acknowledgments
- Contents
- Contributors
- Chapter 1: Ethical Medical Data Donation: A Pressing Issue
- 1.1 Background
- 1.2 Current Debates
- 1.3 This Volume and Its Chapters
- References
- Part I: Conceptualising the Ethics of Medical Data Donation
- Chapter 2: Data Donation: How to Resist the iLeviathan
- 2.1 Data Use in the Era of GAFA
- 2.2 What Does It Mean to Donate Data?
- 2.2.1 Donation as a Relational Practice
- 2.2.2 Can We Donate Data?
- 2.3 Considerations for Frameworks for Data Donation
- 2.3.1 Relationality
- 2.3.2 Indirect Reciprocity
- 2.3.3 Multiplicity
- 2.4 Resisting the iLeviathan? Politicising the Ethics of Data Donation
- References
- Chapter 3: Data Donations as Exercises of Sovereignty
- 3.1 Introduction
- 3.2 Donations and Sovereignty
- 3.3 Reasons in Favour of Data Donations
- 3.3.1 Solidarity
- 3.3.2 Beneficence
- 3.3.3 Participation
- 3.4 Challenges with Data Donations
- 3.4.1 Trust
- 3.4.2 Future Use
- 3.4.3 Invasiveness
- 3.4.4 Ownership
- 3.4.5 Affected People
- 3.4.6 Voluntariness
- 3.5 Donations, Consent and Control
- 3.5.1 Consent
- 3.5.2 Representation
- 3.5.3 Organizations
- 3.5.4 Observation I
- 3.5.5 Observation II
- 3.6 Conclusion
- References
- Chapter 4: The Ethics of Uncertainty for Data Subjects
- 4.1 Uncertainty and Data Ethics
- 4.2 What Features of Data Practices Create Unknowns?
- 4.2.1 Open-Endedness
- 4.2.2 Opacity
- 4.2.3 Persistence
- 4.2.4 Endemic Uncertainties Combined
- 4.3 Two Epistemic Interests of Data Subjects
- 4.3.1 Interests in Trust
- 4.3.2 Interests in Knowing Our Own Obligations
- 4.4 Strategies for Mitigating Uncertainty
- 4.4.1 Systemic Resilience Through Flexible Systemic Oversight
- 4.4.2 Hazard Reduction Through Privacy-by-Design
- 4.4.3 Concluding Reflections
- References.
- Chapter 5: Incongruities and Dilemmas in Data Donation: Juggling Our 1s and 0s
- 5.1 Introduction
- 5.2 Hast Thou Which Art but Data, a Touch, a Feeling?
- 5.3 What We Might Be Donating
- 5.4 Are We at Least with Socrates?
- 5.5 Legal Position - Data vs Tissue
- 5.6 No Man Is an Island Entire of Itself
- 5.7 Data, Data Everywhere, nor any Chance to Think
- 5.8 Up in the Air
- 5.9 Through a Glass Darkly
- 5.10 Life Through a Lens (Or Several)
- 5.11 Minding Our Ps and Qs
- 5.12 The Need for Innovation in Data Governance
- 5.13 Who Are You, Who, Who, Who, Who?
- 5.14 Finding the Black Cat in the Dark Room
- 5.15 Conclusion
- References
- Part II: Governance and Regulation of Medical Data Donation
- Chapter 6: Posthumous Medical Data Donation: The Case for a Legal Framework
- 6.1 Introduction
- 6.2 Legal Protection of Health-Related Data of the Living and the Dead in the UK
- 6.2.1 The Protection of the Data of the Deceased in the Health Sector
- 6.3 Some Issues Around Ownership, Privacy, Control and Succession of Data
- 6.4 A Comparable Regime: Organ Donation
- 6.5 International Framework - Code or Law?
- 6.6 Conclusion
- References
- Chapter 7: Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use
- 7.1 Data Governance and the Promise of PMDD
- 7.2 Timing, Interests and the Limits of Consent
- 7.2.1 A Matter of Timing
- 7.2.2 Interests in PMDD
- 7.2.3 Models of Consent
- 7.3 Authorisation and the Role of the Public Interest
- 7.4 Conclusion
- References
- Part III: Implementing Ethical Medical Data Donation
- Chapter 8: The Personal Data Is Political
- 8.1 Introduction
- 8.2 Sharing Genomic Data
- 8.3 Sharing Neurobiological Data
- 8.4 Data Sharing as a Social Movement
- References.
- Chapter 9: Personal Data Cooperatives - A New Data Governance Framework for Data Donations and Precision Health
- 9.1 The Unique Features of Personal Data
- 9.2 The Need - Aggregated Datasets on Millions of People
- 9.3 The Opportunity - The Legal Right of Citizens to Obtain Copies of Their Personal Data and Their Willingness to Contribute These Data to Research
- 9.3.1 The European General Data Protection Regulation (GDPR) - Data Portability
- 9.3.2 The Willingness and the Right to Citizen Science
- 9.4 The Challenge
- 9.5 The Solution - Data Cooperatives and Personal Data, a Perfect Match
- 9.5.1 Data Cooperatives, Business Model, Non-profit, Financial Incentives
- 9.5.2 Challenges to the Cooperative Model
- 9.5.3 Example: MIDATA Data Cooperative
- 9.5.4 The Data Platform and Governance Form the Core of a New Innovation Ecosystem
- 9.6 Data Cooperatives and Data Donations
- References
- Chapter 10: Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent
- 10.1 Introduction
- 10.2 Defining Data Donation After Death
- 10.3 Data Donation Metadata
- 10.4 Data Advance Directives
- 10.5 Posthumous Data Guardians
- 10.6 Objections
- 10.7 Other Governance Mechanisms
- 10.8 Conclusion
- References
- 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
- 11.1 Introduction
- 11.2 What Is Posthumous Medical Data Donation?
- 11.3 Why We Should Enable PMDD
- 11.4 How Does PMDD Compare to Other Biomedical Donations?
- 11.4.1 Key Differences Among Existing Biomedical Donation Schemes
- 11.5 The Need for an Ethical Code
- 11.6 How to Implement Ethical PMDD
- 11.6.1 Learning from Mistakes and Codifying Best Practice.
- 11.6.2 Deriving Relevant Ethical Principles
- 11.7 Conclusion
- References
- Chapter 12: An Ethical Code for Posthumous Medical Data Donation
- 12.1 Preamble
- 12.2 Considerations
- 12.3 Definitions
- 12.4 Overview
- 12.4.1 Objectives
- 12.4.2 Scope
- 12.5 Foundational Ethical Principles
- 12.5.1 Human Dignity and Respect for Persons
- 12.5.2 Promotion of the Common Good
- 12.5.3 The Right to Citizen Science
- 12.5.4 Quality and Good Data Governance
- 12.5.5 Transparency, Trust, and Integrity
- 12.6 Obtaining PMRs for Research Purposes
- 12.6.1 Obtaining Consent
- 12.6.2 Persons Unable to Give Consent
- 12.6.3 Changing or Withdrawing Consent
- 12.6.4 Refusing Donations
- 12.6.4.1 Refusing a PMDD on Grounds of the Data's Nature
- 12.6.4.2 Refusing a PMDD on Grounds of the Data Source
- 12.6.4.3 Other Grounds for Refusing a PMDD
- 12.7 Research Approval, Conduct and Oversight
- 12.7.1 General Principles
- 12.7.1.1 Prohibition of Financial Gain
- 12.7.1.2 Confidentiality
- 12.7.1.3 Data Custody
- 12.7.1.4 Data Protection
- 12.7.1.5 Directly Identifiable Data
- 12.7.1.6 Information on Health and Hereditary Disease
- 12.7.2 Research Access
- 12.7.2.1 Access Requests
- 12.7.2.2 Research Results
- 12.7.3 Research Oversight
- 12.7.4 Contingency Planning
- References
- Index.