Solidarity in Biomedicine and Beyond

Description

In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer. Cover Page......Page 1 Half Title......Page 3 Series Page......Page 5 Title Page......Page 7 Imprint Page......Page 8 Contents......Page 9 Foreword......Page 13 1.1 Introduction......Page 17 1.2 A Concise Overview of the History of Solidarity......Page 18 1.3 Why Solidarity? Our Previous Work on Solidarity for the Nuffield Council on Bioethics......Page 20 1.4 Solidarity as an Emerging Concept in Recent Bioethical Writing......Page 22 1.5 Looking Ahead: Our Working Definition of Solidarity and Three Case Studies......Page 25 1.6 Overview of this Book: Solidarity, Theory and Practice......Page 26 1.6.1 Theory......Page 27 1.6.2 Practice......Page 28 Acknowledgements and Thanks......Page 30 PART I: Theorising Solidarity......Page 33 2.2 Some Early Sociological Work on Solidarity......Page 35 2.3 Solidarity-Related Themes in Recent and Contemporary Social and Political Thought......Page 39 2.4 Individuals, Community and the Self: Solidarity and Communitarianism......Page 40 2.5 Relational Subjectivity, the Ethics of Care and the Role of Difference: Precursors of, and Influences from Feminist and Postmodern Scholarship......Page 46 2.6 Solidarity and Rational Choice......Page 49 2.7 Inequalities, the Welfare State and Contractual Solidarity......Page 50 2.8 Nation States and Global Solidarity......Page 52 2.9 Inclusion, Exclusion and Conflict: Agonistic Solidarity......Page 55 2.10 Conclusion......Page 57 3.1 Introduction......Page 59 3.2 Solidarity as Practice......Page 60 3.3 Personhood as a Relational Concept......Page 64 3.4.1 Costs......Page 68 3.4.2 Similarity and Commonality......Page 69 3.5 Three Tiers of Solidarity......Page 70 3.6.1 Solidarity and Autonomy......Page 73 3.6.2 Conditions of Possibility for Solidarity......Page 74 3.6.3 Vulnerability......Page 75 3.6.4 Solidarity vs. Friendship and Love......Page 76 3.6.5 Solidarity and Reciprocity......Page 77 3.7 Responses to Our Definition and Critique of Our Approach......Page 78 3.8 Some Political Implications of Our Understanding of Solidarity......Page 86 3.9 Conclusion......Page 87 4.2.1 Descriptive Solidarity......Page 89 4.2.2 Crypto-Normative Usage of Solidarity......Page 90 4.3 Solidarity and Normativity......Page 91 4.4 From Axiological to Deontic: The Normativity of Our Understanding of Solidarity......Page 93 4.5 Normative Solidarity: Three Approaches......Page 96 4.5.1 Deontic Group Solidarity......Page 97 4.5.2 Political Solidarity......Page 102 4.5.3 Universal/Global Solidarity......Page 105 4.6 Conclusions......Page 109 PART II: Solidarity in Practice......Page 111 5.1 Introduction......Page 113 5.2 Power of Big Data......Page 115 5.3.1 Do People Know that They are Contributing Data for Health-Related Research?......Page 118 5.3.2 Do the Databases Serve Public or For-Profit Interests Primarily? Does the Database Aim at Creating Social Value?......Page 119 5.3.3 Are Participants Compensated or Paid for Participating?......Page 121 5.4 Our Approach: Solidarity-Based Databank Governance......Page 122 5.4.1 What 'Costs' of Participating in Databases are Acceptable?......Page 123 5.4.2 Practical Tools for Solidarity-based Governance......Page 124 5.5.1 Voluntariness and Consent to being Governed......Page 125 5.5.2 Partnership, Veracity and Transparency in a Solidarity-based Approach to Database Governance......Page 126 5.6 Implications of a Solidarity-Based Approach for Consent and Returning Findings......Page 129 5.6.1 What Type of Consent Fits Solidarity-Based Database Governance?......Page 130 5.6.2 Access to Data and Returning of Findings......Page 132 5.7 Solidarity and Autonomy as Guiding Principles in Health Database Governance......Page 134 5.8 Harm Mitigation and a Focus on 'Fixing the System'......Page 136 5.9 Conclusion......Page 138 6.1 Introduction......Page 139 6.2 The Changing Meaning of Difference in Medicine......Page 142 6.2.1 From the Representation of Groups to Radical Difference?......Page 143 6.2.2 Bringing (New) Groups Back in......Page 144 6.3.1 Social Biomarkers: Personal Meaning Instead of Algorithmic Prediction......Page 145 6.3.2 A Step to Meaningful Data Sharing: Patient and Participant Access to Raw Data......Page 149 6.3.3 Public Healthcare as an Enabler for Solidaristic Personalised Medicine......Page 151 6.3.4 Redefining 'Nudges': What Solidarity Says about Incentives to Promote Healthy Lifestyles......Page 155 6.4 Conclusion......Page 158 7.1 Introduction......Page 161 7.2 Solidarity and Organ Donation......Page 163 7.3.1 Background Information on Live Organ Donation......Page 165 7.3.2 'Altruistic' Live Organ Donation to a Stranger......Page 167 7.3.3 'Regular' Live Organ Donation and Solidarity......Page 168 7.3.4 Non-related Organ Donation: A Solidaristic Practice......Page 169 7.4.1 LifeSharers: 'Clubs' of Organ Donors......Page 172 7.4.2 The Israeli Organ Transplantation Act 2008......Page 174 7.5.1 Opt-In and Opt-Out Consent Systems......Page 178 7.5.2 Solidarity and Forms of Consent......Page 179 7.6 Conclusions......Page 181 PART III: Conclusions......Page 183 8.1 Introduction......Page 185 8.2.1 Conclusion 1: Unlocking and Shaping Debates......Page 186 8.2.2 Conclusion 2: Practical Utility......Page 187 8.2.3 Conclusion 3: Importance of Background Conditions......Page 188 8.2.4 Ways Forward in Practice and Policy: A Quick Sketch......Page 191 8.3.2 Importance of Relationality......Page 193 8.3.3 Importance of Inter-Individual Solidarity......Page 195 8.3.4 Importance of Community......Page 196 8.3.5 Limits of Solidarity......Page 197 8.4 Solidarity with Whom? Conclusions and Recommendations......Page 199 Beyond Description......Page 203 Beyond Conflict......Page 205 Towards Humility......Page 207 Bibliography......Page 209 C......Page 241 E......Page 242 I......Page 243 O......Page 244 P......Page 245 T......Page 246 W......Page 247 Books in the series......Page 249