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Metastatic cancer and costly precision medicines generate extremely complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of limited health care resources. Philosophers have high hopes for the utility of their theories of justice in addressing the challenges of resource allocation; however, none of these theories can address adequately the ?wicked? ethical problems that have resulted from these targeted therapies. What we need instead, bioethicist Leonard…mehr
Metastatic cancer and costly precision medicines generate extremely complex problems of health care justice. Targeted cancer therapies yield only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of limited health care resources. Philosophers have high hopes for the utility of their theories of justice in addressing the challenges of resource allocation; however, none of these theories can address adequately the ?wicked? ethical problems that have resulted from these targeted therapies. What we need instead, bioethicist Leonard M. Fleck argues, is a political conception of health care justice, following Rawls, and a fair and inclusive process of rational democratic deliberation governed by public reason. His account makes the basic assumption that we have only limited health care resources to meet unlimited health care needs generated by emerging medical technologies. The primary ethical and political virtue of rational democratic deliberation is that it allows citizens to fashion autonomously shared understandings of how to fairly address the complex problems of health care justice generated by precision medicine. While ideally just outcomes are a moral and political impossibility, ?wicked? problems can metastasize if rationing decisions are made invisibly--in ways effectively hidden from those affected by those decisions. As Fleck demonstrates, a fair and inclusive process of democratic deliberation could make these ?wicked? problems visible, and subject, to public reason.
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Autorenporträt
Leonard M. Fleck has been Professor of Philosophy in the Center for Bioethics and Social Justice, College of Human Medicine, Michigan State University since 1985. He is the author of Just Caring: Health Care Rationing and Democratic Deliberation and over 160 journal articles and book chapters addressing a broad range of issues in bioethics and health care policy, especially in relation to genetics, health care rationing, health care justice, and the role of democratic deliberation in addressing those issues.
Inhaltsangabe
* Provocative Prologue * 1. Precision Medicine: An Introduction to Its Ethical Ambiguity * 1.1. Precision Medicine: A Patient Story * 1.2. Precision Medicine: What Is It? * 1.3. Precision Medicine and the "Just Caring" Problem * 1.4. Precision Medicine: Another Case, More Ethics Issues * 1.5. Precision Medicine: Is Rough Justice "Just Enough?" * 1.6. Precision Medicine: Key Ethics Issues * 1.7. Summary and Conclusion * 2. Precision Medicine: Hope, Hype, and Hysteria * 2.1. Precision Medicine: The Evolving Understanding of Cancer * 2.2. Immunotherapy: More Resistance and More Ragged Edges * 2.3. Biomarkers: Seeking Therapeutic Precision * 3. Precision Medicine, Diffuse Wickedness * 3.1. Precision Medicine: Wicked Ethical Issues as Resistant to Ethical Analysis as Any Cancer to Targeted Therapies * 3.1.1. Wickedness: A Conceptual Description * 3.1.2. The Beginning of Wickedness: Cost Matters * 3.1.3. Ibrutinib and CLL: A Paradigm of Wickedness * 3.1.4. Ibrutinib: Complex wickedness * 3.2. More Wicked Scenarios * 3.2.1. Wickedness: Ragged Edges and Bright Lines * 3.2.2. Hemophilia: Wickedly Rough Justice * 3.2.3. Rare Genetic Disorders: More Rough Justice and Wickedness * 3.2.4. Wickedness and PCSK9 Inhibitors * 3.2.5. Hepatitis C: Another Warren of Wickedness * 3.2.6. Kidney Dialysis: The Headwaters of Wickedness * 3.3. Wicked Ragged Edges * 3.4. Spinal Muscular Atrophy: Wickedness at Birth * 3.5. A Wicked Summary * 4. Precision Medicine, Imprecise Health Care Justice * 4.1. Precision Health Reform: What Precisely Should be Included in a Benefit Package Guaranteed to All? * 4.2. Key Challenges to Health Care Justice * 4.3. The Insufficiency of a Sufficientarian Conception of Health Care Justice * 4.4. Luck Egalitarianism and Health Care Justice: Should Responsibility Count? * 4.5. Prioritarianism and Health Care Justice: Are Precise Priorities Possible? * 4.6. Egalitarianism and Health Care Justice: What is Inequitable? * 4.7. Utilitarianism and Health Care Justice: What Care is "Worth It?" * 4.8. Libertarianism and Health Care Justice: Only Getting What You Can Pay For * 4.9. Fair Equality of Opportunity and Health Care Justice * 5. Rational Democratic Deliberation: Seeking Justice Together * 5.1. Rational Democratic Deliberation: Taking Seriously the Tragedy of the Commons * 5.2. Medicare: An Impending Tragedy of the Commons * 5.3. The Just Caring Problem: A Quick Review * 5.4. Public Reason: The Core of Rational Democratic Deliberation * 5.5. Public Reason, Precision Medicine, and Wicked Problems * 5.6. An Outline of a Fair Deliberative Process * 5.7. Just Caring: An Illustrative Example of Democratic Deliberation * 5.8. Rational Democratic Deliberation: The Justification Challenge * 5.9. Democratic Deliberation: Getting to Reflective Equilibrium * 5.10. Priority-Setting, Wide Reflective Equilibrium, and Rational Democratic Deliberation: Addressing the Stability Problem * 5.11. Constitutional Principles of Health Care Justice: Delimiting Deliberation * 6. Rational Democratic Deliberation: Disciplining Wicked Challenges Justly * 6.1. Organizing Precisely a Flexible Deliberative Process * 6.2. Just Deliberations: Tafamidis * 6.3. Some Wicked Prefatory Comments * 6.4. Wicked Problems, Wicked Analyses, Wicked Deliberation * 6.4.1 Combinations of targeted therapies: More benefit? More cost? * 6.4.2 Just tradeoffs: Optional or obligatory * 6.4.3 The super responder challenge: must we maximize? * 6.4.4 Ragged edges and rough justice * 6.4.5 Lazarus patients: Can we afford them? * 6.4.6 Rare cancer drivers: Can we afford the cost of searching? * 6.5 Super Responders: Can Aspirational Precision Medicine Generate Actual Ethical Commitments? * 6.5.1 Precision medicine and non-small-cell lung cancer * 6.5.2 Precision medicine and melanoma * 6.5.3 Precision medicine, breast cancer and therapeutic proliferation * 6.6 Precision Medicine: When is Enough, Enough? * 6.7 CAR T-cell Therapies: Medical Miracle, Ethical Abyss? * 6.8 CLL, Ibrutinib, CAR T-cell Therapy: A Case Study in Endless Needs * 6.9 Some Preliminary Conclusions (A Resting Place) * 7. Obligatory Social Beneficence: The Sufficientarian Challenge * 7.1 Obligatory Social Beneficence: Ending Endless Needs * 7.2 Obligatory Social Beneficence: Application Criteria * 7.3 Identifying the Limits of Social Beneficence * 7.4 Seeking Sufficiency by Setting Priorities * 7.5 How Many Artificial Hearts Will be Sufficient? Age-Based Rationing Redivivus * 7.6 Being NICE: Health Care Justice and the Terminally Ill * 7.7 NICE Alternatives: Canada * 7.8 Two-tiered or Not Two-tiered? That is the Problem * 8. Precision Medicine, Precision Health: Finding Just and Reasonable Trade-offs * 8.1 Just Caring: Cancer, Targeted Therapies, and Cost Control * 8.2 Cancer: Finding the First Cell/ Preventing Future Cells * 8.3 Trading off Identified Lives and Statistical Lives: Ethical Issues * 8.4 Can We Just Abandon Metastatic Cancer Patients to Save Money? * 8.5 The Transition Challenge: Efficiency versus Compassion * 8.6 Whole Genome Sequencing: Another Precision Health Ethical Challenge * 8.7 Rational Democratic Deliberation: Not Precision Ethics But "Roughly Just" * 9. Public Reason and Precision Medicine: Future Hopes * 10. References
* Provocative Prologue * 1. Precision Medicine: An Introduction to Its Ethical Ambiguity * 1.1. Precision Medicine: A Patient Story * 1.2. Precision Medicine: What Is It? * 1.3. Precision Medicine and the "Just Caring" Problem * 1.4. Precision Medicine: Another Case, More Ethics Issues * 1.5. Precision Medicine: Is Rough Justice "Just Enough?" * 1.6. Precision Medicine: Key Ethics Issues * 1.7. Summary and Conclusion * 2. Precision Medicine: Hope, Hype, and Hysteria * 2.1. Precision Medicine: The Evolving Understanding of Cancer * 2.2. Immunotherapy: More Resistance and More Ragged Edges * 2.3. Biomarkers: Seeking Therapeutic Precision * 3. Precision Medicine, Diffuse Wickedness * 3.1. Precision Medicine: Wicked Ethical Issues as Resistant to Ethical Analysis as Any Cancer to Targeted Therapies * 3.1.1. Wickedness: A Conceptual Description * 3.1.2. The Beginning of Wickedness: Cost Matters * 3.1.3. Ibrutinib and CLL: A Paradigm of Wickedness * 3.1.4. Ibrutinib: Complex wickedness * 3.2. More Wicked Scenarios * 3.2.1. Wickedness: Ragged Edges and Bright Lines * 3.2.2. Hemophilia: Wickedly Rough Justice * 3.2.3. Rare Genetic Disorders: More Rough Justice and Wickedness * 3.2.4. Wickedness and PCSK9 Inhibitors * 3.2.5. Hepatitis C: Another Warren of Wickedness * 3.2.6. Kidney Dialysis: The Headwaters of Wickedness * 3.3. Wicked Ragged Edges * 3.4. Spinal Muscular Atrophy: Wickedness at Birth * 3.5. A Wicked Summary * 4. Precision Medicine, Imprecise Health Care Justice * 4.1. Precision Health Reform: What Precisely Should be Included in a Benefit Package Guaranteed to All? * 4.2. Key Challenges to Health Care Justice * 4.3. The Insufficiency of a Sufficientarian Conception of Health Care Justice * 4.4. Luck Egalitarianism and Health Care Justice: Should Responsibility Count? * 4.5. Prioritarianism and Health Care Justice: Are Precise Priorities Possible? * 4.6. Egalitarianism and Health Care Justice: What is Inequitable? * 4.7. Utilitarianism and Health Care Justice: What Care is "Worth It?" * 4.8. Libertarianism and Health Care Justice: Only Getting What You Can Pay For * 4.9. Fair Equality of Opportunity and Health Care Justice * 5. Rational Democratic Deliberation: Seeking Justice Together * 5.1. Rational Democratic Deliberation: Taking Seriously the Tragedy of the Commons * 5.2. Medicare: An Impending Tragedy of the Commons * 5.3. The Just Caring Problem: A Quick Review * 5.4. Public Reason: The Core of Rational Democratic Deliberation * 5.5. Public Reason, Precision Medicine, and Wicked Problems * 5.6. An Outline of a Fair Deliberative Process * 5.7. Just Caring: An Illustrative Example of Democratic Deliberation * 5.8. Rational Democratic Deliberation: The Justification Challenge * 5.9. Democratic Deliberation: Getting to Reflective Equilibrium * 5.10. Priority-Setting, Wide Reflective Equilibrium, and Rational Democratic Deliberation: Addressing the Stability Problem * 5.11. Constitutional Principles of Health Care Justice: Delimiting Deliberation * 6. Rational Democratic Deliberation: Disciplining Wicked Challenges Justly * 6.1. Organizing Precisely a Flexible Deliberative Process * 6.2. Just Deliberations: Tafamidis * 6.3. Some Wicked Prefatory Comments * 6.4. Wicked Problems, Wicked Analyses, Wicked Deliberation * 6.4.1 Combinations of targeted therapies: More benefit? More cost? * 6.4.2 Just tradeoffs: Optional or obligatory * 6.4.3 The super responder challenge: must we maximize? * 6.4.4 Ragged edges and rough justice * 6.4.5 Lazarus patients: Can we afford them? * 6.4.6 Rare cancer drivers: Can we afford the cost of searching? * 6.5 Super Responders: Can Aspirational Precision Medicine Generate Actual Ethical Commitments? * 6.5.1 Precision medicine and non-small-cell lung cancer * 6.5.2 Precision medicine and melanoma * 6.5.3 Precision medicine, breast cancer and therapeutic proliferation * 6.6 Precision Medicine: When is Enough, Enough? * 6.7 CAR T-cell Therapies: Medical Miracle, Ethical Abyss? * 6.8 CLL, Ibrutinib, CAR T-cell Therapy: A Case Study in Endless Needs * 6.9 Some Preliminary Conclusions (A Resting Place) * 7. Obligatory Social Beneficence: The Sufficientarian Challenge * 7.1 Obligatory Social Beneficence: Ending Endless Needs * 7.2 Obligatory Social Beneficence: Application Criteria * 7.3 Identifying the Limits of Social Beneficence * 7.4 Seeking Sufficiency by Setting Priorities * 7.5 How Many Artificial Hearts Will be Sufficient? Age-Based Rationing Redivivus * 7.6 Being NICE: Health Care Justice and the Terminally Ill * 7.7 NICE Alternatives: Canada * 7.8 Two-tiered or Not Two-tiered? That is the Problem * 8. Precision Medicine, Precision Health: Finding Just and Reasonable Trade-offs * 8.1 Just Caring: Cancer, Targeted Therapies, and Cost Control * 8.2 Cancer: Finding the First Cell/ Preventing Future Cells * 8.3 Trading off Identified Lives and Statistical Lives: Ethical Issues * 8.4 Can We Just Abandon Metastatic Cancer Patients to Save Money? * 8.5 The Transition Challenge: Efficiency versus Compassion * 8.6 Whole Genome Sequencing: Another Precision Health Ethical Challenge * 8.7 Rational Democratic Deliberation: Not Precision Ethics But "Roughly Just" * 9. Public Reason and Precision Medicine: Future Hopes * 10. References
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