Precision Medicine and Distributive Justice

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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• Saude pessoal e pública
• Ética médica e conduta profissional
• Bioética