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The Ethics of Medical Data Donation.

Yazar:Krutzinna, Jenny
Katkıda bulunan(lar):Floridi, Luciano
Materyal türü: KonuKonuSeri kaydı: Yayıncı: Cham : Springer International Publishing AG, 2019Telif hakkı tarihi: �2019Tanım: 1 online resource (199 pages)İçerik türü:text Ortam türü:computer Taşıyıcı türü: online resourceISBN: 9783030043636Tür/Form:Electronic books.Ek fiziksel biçimler:Print version:: The Ethics of Medical Data DonationLOC classification: RA1-418.5Çevrimiçi kaynaklar: Click to View
İçindekiler:
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.
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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.

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Electronic reproduction. Ann Arbor, Michigan : ProQuest Ebook Central, 2022. Available via World Wide Web. Access may be limited to ProQuest Ebook Central affiliated libraries.

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