Vulnerability : Challenging Bioethics

Alongside globalization, the sense of vulnerability among people and populations has increased. We feel vulnerable to disease as new infections spread rapidly across the globe, while disasters and climate change make health increasingly precarious. Moreover, clinical trials of new drugs often exploit vulnerable populations in developing countries that otherwise have no access to healthcare and new genetic technologies make people with disabilities vulnerable to discrimination. Therefore the concept of ‘vulnerability’ has contributed new ideas to the debates about the ethical dimensions of medicine and healthcare. This book explains and elaborates the new concept of vulnerability in today’s bioethics. Firstly, Henk ten Have argues that vulnerability cannot be fully understood within the framework of individual autonomy that dominates mainstream bioethics today: it is often not the individual person who is vulnerable, rather that his or her vulnerability is created through the social and economic conditions in which he or she lives. Contending that the language of vulnerability offers perspectives beyond the traditional autonomy model, this book offers a new approach which will enable bioethics to evolve into a global enterprise. This groundbreaking book critically analyses the concept of vulnerability as a global phenomenon. It will appeal to scholars and students of ethics, bioethics, globalization, healthcare, medical science, medical research, culture, law, and politics. Cover 1 Half Title 2 Title Page 4 Copyright Page 5 Dedication 6 Table of Contents 7 1 The idea of vulnerability 11 What is ‘vulnerability’? 12 Examples of vulnerability 13 Senior citizens 13 Homelessness 14 Vulnerable populations in research 16 Vulnerable countries 18 Three dimensions of vulnerability 19 Vulnerability and bioethics 21 Challenges to bioethics 24 2 Growing interest in vulnerability 27 Vulnerability in the scholarly literature 27 Expanding vulnerability 30 Opposites of vulnerability 31 Security 31 Resilience 33 The use of vulnerability in ethics and bioethics 34 The attractiveness of vulnerability discourse 35 Conclusion 37 3 Vulnerability in the context of health care and bioethics 41 The birth certificate of vulnerability 42 The background expert reports 44 The CIOMS Guidelines 46 The Declaration of Helsinki 51 The Universal Declaration on Bioethics and Human Rights 51 Controversial dimensions of vulnerability 53 Status 53 Content 54 Scope 55 Implications 56 An indispensable concept for bioethics 57 4 The bioethical discourse of vulnerability 61 Vulnerability as bioethical notion 62 Bioethical framing of vulnerability 64 Prioritizing the principle of autonomy 64 Neutralizing the principle of justice 65 Diverging assessments of vulnerability 66 Need for vulnerability as critical concept 67 Vulnerability as heuristic tool 68 Conceptual progress 70 Basic types of vulnerability 71 Categorizing groups and populations 73 Implications of vulnerability 77 Reconciling different perspectives 81 5 We are all vulnerable: Philosophical perspectives on vulnerability 87 Pragmatic approaches of vulnerability 88 Understanding vulnerability: a peripheral approach 90 Variations on the same theme 90 Vulnerability as natural imperfection 90 Vulnerability as bodily corruption 91 Vulnerability as experience 92 Vulnerability as relatedness 93 Vulnerability as dependency 94 Vulnerability as being hostage 96 Anthropological rather than ontological vulnerability 97 Why is anthropological vulnerability important for bioethics? 101 Universality 101 Passivity 102 Positivity 103 Vulnerability as ethical principle 105 Linking philosophical and political perspectives 106 Conclusion 108 6 Some of us are more vulnerable: Political perspectives on vulnerability 113 Vulnerability exacerbated 114 Special vulnerability 114 Social ethics 116 Beyond individual agency and autonomy 116 Human interaction and cooperation 117 The social context of special vulnerability 118 The production of vulnerability 120 Structural violence 121 Inequality 121 Power 122 Exploitation 123 Injustice 124 Lack of freedom 124 Disrespect 124 Vulnerability 124 Exploitation and power differences 125 Structural exploitation 126 Exploitative arrangements 126 Social connectedness and political responsibility 127 A global perspective 128 7 Vulnerability is everywhere: Globalization and vulnerability 134 Vulnerability as a phenomenon of globalization 135 Globalism 135 Neoliberal claims 135 Global production of vulnerability 136 Existential insecurity 137 Social disintegration 138 Neutralizing vulnerability 139 The dimensions of globalism today 140 A different bioethics 143 Two faces of vulnerability 144 Conclusion 145 8 Theoretical implications of vulnerability 149 Human rights 150 Human rights and bioethics 150 Scope of human rights 151 Individual focus? 152 Social engagement? 153 The use of human rights 153 Social justice 153 The need for a justice perspective 154 The problems with social justice 155 Scope of social justice 155 Relevance of social justice 156 A broader concept of justice 157 Obligations 157 Responsibilities 158 Institution-building 158 Representation 159 The challenge of global justice 159 Capabilities 160 Capabilities and vulnerability 161 Vulnerability as limitation of capabilities 162 Structural capability constraints 163 The sociality of capabilities 164 Advantages of the capabilities approach 165 Challenges 166 Global care 167 The impact of globalization 168 Globalizing the discourse of care 168 Relatedness 169 Dependency 169 Responsibility 170 Cooperation and solidarity 170 Contextuality 170 Advantages and challenges 170 Society 171 International relations 171 Globalization policies 172 Global institutions 172 Conclusion 172 9 Practical applications of vulnerability 183 The impact of vulnerability on bioethics 183 Global scope 183 Broader agenda 184 Critical focus on social context 184 Advocacy and activism 185 Promoting participation 186 Cooperation and sustaining networks 187 Vulnerability’s power of inspiration 188 Bibliography 192 Index 212 Alongside globalization, the sense of vulnerability among people and populations has increased. We feel vulnerable to disease as new infections spread rapidly across the globe, while disasters and climate change make health increasingly precarious. Moreover, clinical trials of new drugs often exploit vulnerable populations in developing countries that otherwise have no access to health care and new genetic technologies make people with disabilities vulnerable to discrimination. Therefore the concept of 'vulnerability' has contributed new ideas to the debates about the ethical dimensions of medicine and health care. This book explains and elaborates the new concept of vulnerability in today's bioethics