The Connected Self: The Ethics And Governance Of The Genetic Individual (cambridge Bioethics And Law)

[Publisher-supplied data] Currently, the ethics infrastructure -- from medical and scientific training to the scrutiny of ethics committees -- focuses on trying to reform informed consent to do a job which it is simply not capable of doing. Consent, or choice, is not an effective ethical tool in public ethics and is particularly problematic in the governance of genetics. Heather Widdows suggests using alternative and additional ethical tools and argues that if individuals are to flourish it is necessary to recognise and respect communal and public goods as well as individual goods. To do this she suggests a two-step process -- the 'ethical toolbox'. First the harms and goods of the particular situation are assessed and then appropriate practices are put in place to protect goods and prevent harms. This debate speaks to core concerns of contemporary public ethics and suggests a means to identify and prioritise public and common goods. Cover 1 Contents 11 Preface 13 Acknowledgements 15 Introduction 17 The claims of the connected self 19 The structure of the connected self 20 1 The individual self and its critics 22 Introduction 22 The individual, separate self 23 Feminism 24 Virtue ethics 27 Conclusion 29 2 The individualist assumptions of ethical frameworks 31 Promotion of a narrow individual model 32 Development of the individual model 34 Duty to the individual patient 34 Methodology 36 Simple and easy 38 The choice model 39 The limits of choice 40 Fear of paternalism 42 Conclusion 44 3 The genetic self is the connected self 46 Introduction 46 Genetic material and information 47 Valuable material and information 50 Genetic information as shared information 52 The individual self (again) 56 Personalised medicine 56 Genetic information is identifying 59 Confusions regarding anonymisation 59 Possibilities of identification 61 Genetic exceptionalism 69 The extent of sharing 72 Conclusion 77 4 The failures of individual ethics in the genetic era 78 Introduction 78 Informed consent 78 Respecting connected others 80 Group goods 81 Informed consent and biobanking 87 Future-orientated 89 A research resource, not a research project 91 Withdrawal 92 Broad consent 95 Beyond consent 96 Confidentiality 97 The shared nature of genetic material: implications 98 The identifying nature of genetic material: implications 100 The Icelandic example 100 Conclusion 102 5 The communal turn 104 Introduction 104 The “communal turn” in bioethics 104 Emerging models in the communal turn 107 Expanding consent and to families and groups 108 Group consent in research 108 Family consent 110 Problems with group consent 111 Collapses into individual consent 112 Consenting for the group 112 Protecting vulnerable individuals in groups 114 Group consent is still consent 114 Exploitation 115 Conclusion 116 6 Developing alternatives: benefit sharing 118 Introduction 118 Benefit sharing 118 Development of benefit sharing 120 Types of benefit sharing 125 Shared patenting: the PXE case 126 Strengths of benefit sharing 127 Recognises rights and interests of connected persons 127 Has the potential to address the “one-off” problem 128 Flexible and appropriate 130 Overcoming some worries of inducement to participate 130 Weaknesses of benefit sharing 132 Complexity 132 Global/local tension 133 Property and commodification 136 Conclusion 139 7 Developing alternatives: trust 140 Introduction 140 The trust model 140 The development of “trust” from “gift” 141 Versions of trust 147 The shareholder model 147 The stakeholder approach 148 UK Biobank 150 Strengths of trust 152 Includes different groups and individuals 152 Not “one-off” 153 Control without ownership 153 Weaknesses of trust 155 Collapse into broad consent 155 Mass withdrawal 156 Conclusion 160 8 The ethical toolbox part one: recognising goods and harms 162 Introduction 162 Groups and vulnerable individuals 163 Types of groups and the goods which attach to them 167 Human rights framework 172 Corporate groups and their goods 173 Collective groups and their goods 176 Conclusion 177 9 The ethical toolbox part two: applying appropriate practices 179 Introduction 179 The ethical toolbox method 179 Advantages of the ethical toolbox 180 Recognises the connected self of the genetic era 181 Works over time 183 Recognises goods of all types 185 Control without property 186 Contributes to social capital and engenders trust 188 Disadvantages of the ethical toolbox 190 Overly complex, bureaucratic and cumbersome 190 Paternalistic 192 Fails to protect individuals 192 Conclusion 193 10 Possible futures 195 Bibliography 198 Index 216 Quatrième de couverture : Currently, the ethics infrastructure - from medical and scientific training to the scrutiny of ethics committees - focuses on trying to reform informed consent to do a job which it is simply not capable of doing. Consent, or choice, is not an effective ethical tool in public ethics and is particularly problematic in the governance of genetics. Heather Widdows suggests using alternative and additional ethical tools and argues that if individuals are to flourish it is necessary to recognise and respect communal and public goods as well as individual goods. To do this she suggests a two-step process -- the 'ethical toolbox'. First the harms and goods of the particular situation are assessed and then appropriate practices are put in place to protect goods and prevent harms. This debate speaks to core concerns of contemporary public ethics and suggests a means to identify and prioritise public and common goods The individual self and its critics The individualist assumptions of bioethical frameworks The genetic self is the connected self The failures of individual ethics in the genetic era The communal turn Developing alternatives: benefit sharing Developing alternatives: trust The ethical toolbox part one: recognising goods and harms The ethical toolbox part two: applying appropriate practices Possible futures. The genetic self is the connected self. Dominant ethical frameworks – particularly those of choice and consent – fail to recognise this. Accordingly, ethical practices offer little protection and permit significant injustice. New frameworks of ethics and governance are needed which respect relationships and groups as well as common and public goods.