The Governance of Genetic Information: Who Decides?

Half-title......Page 3
Series-title......Page 4
Title......Page 7
Copyright......Page 8
Contents......Page 9
Notes on Contributors......Page 11
Preface......Page 13
Introduction......Page 15
Section One: Problematising governance of genetic information......Page 16
Section Two: Ethical frameworks of governance......Page 18
Section Three: Redesigning governance......Page 22
SECTION I Problematising governance of genetic information......Page 27
1 The medium and the message: tissue samples, genetic information and data protection legislation......Page 29
Human tissue and data protection......Page 30
What is information?......Page 32
What is genetic information?......Page 34
Data subjects\' rights and objective genetic information......Page 39
Images, x-rays and data protection......Page 42
Privacy, information and consent-centred regulation......Page 45
Conclusion......Page 49
Two unhelpful approaches......Page 51
Three idealised positions......Page 52
The arguments for the patient/client as primary controller......Page 54
The arguments for the family......Page 56
The argument for the state......Page 61
Conclusion......Page 63
Acknowledgements......Page 64
3 Decisions, consent and expectations of the individual......Page 65
Donor interests......Page 68
Control of interests......Page 70
Protection from bad practice......Page 73
Individual responsibilities and important people......Page 74
Significant interest in life......Page 75
Individual responsibility......Page 76
Participant objections, medical demands and the force of equality......Page 78
Is there an obligation not to donate?......Page 82
Working out how your genetic resources should be used......Page 84
Conclusion......Page 85
SECTION II Ethical frameworks of governance......Page 87
4 Constructing communal models of governance: collectives of individuals or distinct ethical loci?......Page 89
The problems of individualism in bioethics......Page 90
The global failure of individual models......Page 94
The move towards communal models......Page 97
Constructing groups and their rights......Page 101
Assessing the corporate model......Page 103
Protecting individuals and corporate groups......Page 105
Assessing the collective model......Page 106
Applying group models to bioethics......Page 107
Conclusion......Page 111
5 Rights, responsibility and stewardship: beyond consent......Page 113
Consent in a community of rights......Page 116
Understating rights-based responsibility......Page 123
Positive responsibilities......Page 124
State stewardship......Page 131
Conclusion......Page 138
6 Who decides what? Relational ethics, genetics and well-being......Page 140
The ethic of care and the care perspective......Page 141
Enhancement technologies......Page 143
Emerging trends......Page 152
Reciprocity......Page 153
Mutuality......Page 155
Solidarity......Page 156
Alternative principles......Page 158
SECTION III redesigning governance......Page 163
7 Involving publics in biobank governance: moving beyond existing approaches......Page 165
UK Biobank and its Ethics and Governance Council......Page 166
UK Biobank consultations......Page 168
The shareholder approach: from consultation to representation......Page 169
A shareholder approach: practical issues......Page 171
A shareholder approach: conceptual issues......Page 175
The stakeholder approach – from representation to participation......Page 181
Identifying stakeholders......Page 183
Involving stakeholders......Page 185
The stakeholder participation strategy......Page 186
The stakeholder involvement strategy......Page 187
Conclusion......Page 190
Acknowledgements......Page 191
Genetic information and biobanks......Page 192
Public consultation......Page 198
The Habermasian public sphere......Page 203
Complexity......Page 207
Mystique......Page 210
Conclusion......Page 213
9 Harmonisation and standardisation in ethics and governance: conceptual and practical challenges......Page 215
Is harmonisation in ethics possible?......Page 216
Threefold typology......Page 218
Necessary conditions model......Page 219
Human rights model......Page 220
Dialogue approach......Page 223
Summary......Page 224
Standards......Page 225
Acknowledgement......Page 227
Bibliography......Page 228
Index......Page 243