"Wicked ethical problems have been generated by precision medicine due to both the wiliness of cancer and the fragmentation of health care financing in the United States. The wiliness of cancer has resulted in these targeted cancer therapies yielding only very marginal gains in life expectancy for most patients at very great cost, thereby threatening the just allocation of health care resources. As a life-threatening phenomenon, cancer is not morally special. Philosophers have high hopes for the utility of their theories of justice. However, metastatic cancer and costly precision medicines generate extremely complex problems of health care justice that none of these theories can address adequately. What is needed instead is a political conception of health care justice (following Rawls) and a fair and inclusive process of rational democratic deliberation governed by public reason. A basic assumption is that society has 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 as citizens to fashion autonomously shared understandings of how to address fairly the complex problems of health care justice generated by precision medicine. Still, in a pluralistic world, 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 affectedby those decisions. A fair and inclusive process of democratic deliberation makes wicked problems visible to public reason"--
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.
Provocative Prologue1. Precision Medicine: An Introduction to Its Ethical Ambiguity1.1. Precision Medicine: A Patient Story1.2. Precision Medicine: What Is It?1.3. Precision Medicine and the "Just Caring" Problem1.4. Precision Medicine: Another Case, More Ethics Issues1.5. Precision Medicine: Is Rough Justice "Just Enough?"1.6. Precision Medicine: Key Ethics Issues1.7. Summary and Conclusion2. Precision Medicine: Hope, Hype, and Hysteria2.1. Precision Medicine: The Evolving Understanding of Cancer2.2. Immunotherapy: More Resistance and More Ragged Edges2.3. Biomarkers: Seeking Therapeutic Precision3. Precision Medicine, Diffuse Wickedness3.1. Precision Medicine: Wicked Ethical Issues as Resistant to Ethical Analysis as Any Cancer to Targeted Therapies3.1.1. Wickedness: A Conceptual Description3.1.2. The Beginning of Wickedness: Cost Matters3.1.3. Ibrutinib and CLL: A Paradigm of Wickedness3.1.4. Ibrutinib: Complex wickedness3.2. More Wicked Scenarios3.2.1. Wickedness: Ragged Edges and Bright Lines 3.2.2. Hemophilia: Wickedly Rough Justice 3.2.3. Rare Genetic Disorders: More Rough Justice and Wickedness3.2.4. Wickedness and PCSK9 Inhibitors 3.2.5. Hepatitis C: Another Warren of Wickedness3.2.6. Kidney Dialysis: The Headwaters of Wickedness3.3. Wicked Ragged Edges3.4. Spinal Muscular Atrophy: Wickedness at Birth3.5. A Wicked Summary4. Precision Medicine, Imprecise Health Care Justice4.1. Precision Health Reform: What Precisely Should be Included in a Benefit Package Guaranteed to All?4.2. Key Challenges to Health Care Justice4.3. The Insufficiency of a Sufficientarian Conception of Health Care Justice4.4. 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 For4.9. Fair Equality of Opportunity and Health Care Justice5. Rational Democratic Deliberation: Seeking Justice Together5.1. Rational Democratic Deliberation: Taking Seriously the Tragedy of the Commons5.2. Medicare: An Impending Tragedy of the Commons5.3. The Just Caring Problem: A Quick Review5.4. Public Reason: The Core of Rational Democratic Deliberation5.5. Public Reason, Precision Medicine, and Wicked Problems5.6. An Outline of a Fair Deliberative Process5.7. Just Caring: An Illustrative Example of Democratic Deliberation5.8. Rational Democratic Deliberation: The Justification Challenge5.9. Democratic Deliberation: Getting to Reflective Equilibrium5.10. Priority-Setting, Wide Reflective Equilibrium, and Rational Democratic Deliberation: Addressing the Stability Problem5.11. Constitutional Principles of Health Care Justice: Delimiting Deliberation6. Rational Democratic Deliberation: Disciplining Wicked Challenges Justly6.1. Organizing Precisely a Flexible Deliberative Process6.2. Just Deliberations: Tafamidis6.3. Some Wicked Prefatory Comments6.4. Wicked Problems, Wicked Analyses, Wicked Deliberation6.4.1 Combinations of targeted therapies: More benefit? More cost? 6.4.2 Just tradeoffs: Optional or obligatory6.4.3 The super responder challenge: must we maximize?6.4.4 Ragged edges and rough justice6.4.5 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 cancer6.5.2 Precision medicine and melanoma6.5.3 Precision medicine, breast cancer and therapeutic proliferation6.6 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 Needs6.9 Some Preliminary Conclusions (A Resting Place)7. Obligatory Social Beneficence: The Sufficientarian Challenge7.1 Obligatory Social Beneficence: Ending Endless Needs7.2 Obligatory Social Beneficence: Application Criteria7.3 Identifying the Limits of Social Beneficence7.4 Seeking Sufficiency by Setting Priorities7.5 How Many Artificial Hearts Will be Sufficient? Age-Based Rationing Redivivus7.6 Being NICE: Health Care Justice and the Terminally Ill7.7 NICE Alternatives: Canada7.8 Two-tiered or Not Two-tiered? That is the Problem 8. Precision Medicine, Precision Health: Finding Just and Reasonable Trade-offs8.1 Just Caring: Cancer, Targeted Therapies, and Cost Control8.2 Cancer: Finding the First Cell/ Preventing Future Cells8.3 Trading off Identified Lives and Statistical Lives: Ethical Issues8.4 Can We Just Abandon Metastatic Cancer Patients to Save Money?8.5 The Transition Challenge: Efficiency versus Compassion8.6 Whole Genome Sequencing: Another Precision Health Ethical Challenge8.7 Rational Democratic Deliberation: Not Precision Ethics But "Roughly Just"9. Public Reason and Precision Medicine: Future Hopes10. References
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.
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