HUMAN RIGHTS, DIGNITY AND AUTONOMY IN HEALTH CARE AND SOCIAL SERVICES: NORDIC PERSPECTIVES

Transcription

1 HUMAN RIGHTS, DIGNITY AND AUTONOMY IN HEALTH CARE AND SOCIAL SERVICES: NORDIC PERSPECTIVES Henriette SINDING AASEN Rune HALVORSEN Antonio BARBOSA DA SILVA (eds.)

2 TABLE OF CONTENTS PREFACE ABOUT THE EDITORS AND CONTRIBUTORS ACKNOWLEDGEMENTS LIST OF ABBREVIATIONS v ix xi xix INTRODUCTION Henriette SINDING AASEN, Rune HALVORSEN and Antonio BARBOSA DA SILVA 1 PARTI BASIC CONCEPTS, THEORY AND NORMATIVE FRAMEWORK CHAPTER 1 AUTONOMY, DIGNITY AND INTEGRITY IN HEALTH CARE ETHICS - A MORAL PHILOSOPHICAL PERSPECTIVE Ant6nio BARBOSA DA SILVA Introduction The Ambiguity of the Terms 'Autonomy', 'Dignity' and 'Integrity' Autonomy in Kant's, Post-Kantian, and Non-Humanistic Philosophy Conceptual Clarification Autonomy as an Inherent Human Property According to Kant Autonomy, Human Reason and Their Interrelationship According to Kant Autonomy in Post-Kantian Humanism Autonomy in Non-Humanistic Philosophy Autonomy as a Normative Principle in Humanistic Health Care Ethics Human Dignity in Humanistic and Non-Humanistic Philosophy Conceptual Clarification Human Dignity in Kantian Humanism Human Dignity, the Sanctity of Life and Their Relationship 23 xiu

3 The Relationship Between Autonomy and Dignity in Kant's Ethics Human Dignity in Post-Kantian Humanism The Objective Versus Subjective Concept of Dignity According to Humanism Human Dignity in Non-Humanistic Philosophy Dignity as the Basic Normative Principle in Health Care Ethics Integrity from both Humanistic and Non-Humanistic Perspectives Conceptual Clarification Integrity in the Humanistic and the Non-Humanistic Philosophy Personal Integrity Versus Moral Integrity Autonomy, Integrity and Dignity in Non-Kantian Humanism Integrity in Non-Humanistic Philosophy Human Dignity as the Basis of Modern Human Rights, Health Care and Law Conceptual Clarification Natural Law, Human Rights and Legal Right, and Their Interrelationship Five Logically Possible Relationships Between Law and Morality Human Dignity as the Basis of Morality, Law and Human Rights Autonomy, Dignity and Integrity, and Their Interrelationship After Kant Autonomy, Dignity, Integrity and Ethics in Post-Kant Humanism Non-Humanistic Views of Autonomy, Dignity, Integrity and Health Care Ethics The View of the Human Being as the Ultimate Basis for Human Dignity Conclusions 51 CHAPTER 2 DIGNITY AND HUMAN RIGHTS IN THE MODERN WELFARE STATE Henriette SINDING AASEN Introduction Human Dignity and the Modern Welfare State Human Dignity and Human Rights The Unity and Interdependence of Human Rights 61 xiv

4 5. Autonomy and Consent as the Legal Starting Point An Overview Free Informed Consent as a Basic Patient Right Autonomy and Consent in Social Services Conclusions 67 PART II PROTECTION OF VULNERABLE INDIVIDUALS IN HEALTH CARE, MEDICAL RESEARCH AND SOCIAL SERVICES CHAPTER 3 CHILDREN'S RIGHT TO PARTICIPATE IN HEALTH CARE DECISIONS Kirsten SANDBERG Introduction Convention on the Rights of the Child, Article The Child's Right to Be Heard The Weight Given to the Child's Own Views The Right to Consent to or Reject Treatment - What Happens in Norway? The Rights of Children Above the Age of The Rights of Children Below the Age of The Child's Right to Participation - Norway The Right to Information Lack of Parental Consent Parents Disagreeing with Each Other The Child's Participation and Autonomy Conclusions 87 CHAPTER 4 CHILDREN'S PARTICIPATION IN THE CHILD WELFARE SYSTEM Marit SKIVENES Introduction Decision-Making in Child Welfare Cases Why Should Children Be Involved in Decisions Concerning Themselves? 93 xv

5 4. Obstacles to Children's Participation The Role of Children's Views in Child Welfare Cases Data Sources Reasons for Advocating Children's Participation Giving the Child's View Due Weight Conclusions 102 CHAPTER5 AUTONOMY, HUMAN DIGNITY AND TREATMENT OF INDIVIDUALS WITH COGNITIVE IMPAIRMENT Henriette SINDING AASEN Introduction Human Dignity and the Rights at Stake Human Dignity as the Basic Value The Rights at Stake: An Overview The Right to Health Care The Right to Private Life, Self-Determination and Liberty The Right to Life The Right to Freedom from Torture, Inhuman or Degrading Treatment Summary Legal Protection of Persons with Cognitive Impairment The International Legal Development and Requirements: A Brief Introduction The Requirement of Incapacity Due to Specified Relevant Reasons Decisions About Incapacity The Requirements of Proportionality and Direct Benefit Proxy Consent The Requirement of Consent from a Representative The Rights and Duties of the Patient's Representative Patient Participation Cognitive Impairment and the Use of Coercion Conclusions 126 xvi

6 CHAPTER 6 COERCIVE TREATMENT AND HUMAN DIGNITY Mette HARTLEV Introduction The Concept of Dignity Moral Philosophy Human Rights Law Coercion Coercion and Respect for Personal Autonomy Coercion and Respect for the Intrinsic Worth of All Human Beings Coercion and Dignified Conditions Conclusions 144 CHAPTER 7 HUMAN DIGNITY, THE VALUE OF KNOWLEDGE, AND THE LIMITS OF SCIENTIFIC FREEDOM Antonio BARBOSA DA SILVA Introduction Scientific Freedom and the Value of Knowledge What is Scientific Freedom? The Foundation of Scientific Freedom of Decision and Action Intrinsic Versus Extrinsic Values and the Issue of Ends and Means The Relationship Between Intrinsic and Extrinsic Value Human Dignity and Integrity as the Ultimate Limitations on Scientific Freedom The Relationship Between the Value of Knowledge and that of the Human Being The Duty of Society to Prevent Abuse of Scientific Freedom Conclusions 159 CHAPTER 8 AUTONOMY AND DIGNITY IN CLINICAL MEDICAL RESEARCH ON ADULTS WITH COGNITIVE IMPAIRMENT Salla LOTJONEN Introduction Dignity and Autonomy 162 xvii

7 3. Dignity and Autonomy in Medical Research on Adults Who Lack Decision-Making Capability Primacy of the Human Being Risks Versus Benefits Respecting the Wishes of a Person not Able to Give Valid Consent Informing the Subject and Considering His or Her Previous Wishes and Presumed Will Respecting the Objection of the Research Subject Conclusions 173 CHAPTER9 NORDIC DISABILITY PROTECTION MEETING SUPRANATIONAL EQUAL TREATMENT POLICY - A BOOST FOR THE HUMAN RIGHTS OF PERSONS WITH DISABILITIES? Rune HALVORSEN and Bjorn HVINDEN Introduction Nordic Disability Protection: A System Perspective The Nordic Model of Welfare and Disability Protection An Assessment of Nordic Disability Protection in Practice Overall Policy Effort: Redistributive Provisions The Social Benefit Subsystem: Income Maintenance The Social Benefit Subsystem: Measures for Promoting Employment The Social Services Subsystem The Social Regulation Subsystem The Inherent Weaknesses of Nordic Disability Protection Social Regulation as a Neglected Aspect of Nordic Disability Protection: Policies to Promote Labour Market Participation The Institutional Context of Nordic Disability Protection Conclusions 201 PART III CONCLUSIONS AND CHALLENGES Henriette SINDING AASEN, Rune HALVORSEN and Antonio BARBOSA DA SILVA xvm