| |
| |
Preface | |
| |
| |
Acknowledgements | |
| |
| |
| |
Consent: Nuremberg, Helsinki and beyond | |
| |
| |
Introduction | |
| |
| |
Beginning at Nuremberg | |
| |
| |
Extending scope: from research ethics to clinical ethics | |
| |
| |
Raising standards: explicit and specific consent | |
| |
| |
Improving justifications: the quest for autonomy | |
| |
| |
Regulatory reinforcement: consent requirements | |
| |
| |
Conclusion | |
| |
| |
| |
Information and communication: the drift from agency | |
| |
| |
Framing informed consent | |
| |
| |
Two layers of distortion | |
| |
| |
Information and the drift from agency | |
| |
| |
What the conduit and container metaphors hide | |
| |
| |
Conclusion | |
| |
| |
| |
Informing and communicating: back to agency | |
| |
| |
Agency | |
| |
| |
Communicative actions | |
| |
| |
Communicative norms | |
| |
| |
Two 'models' of information and communication | |
| |
| |
| |
How to rethink informed consent | |
| |
| |
Introduction: two models of informed consent | |
| |
| |
Why consent transactions matter: beyond autonomy | |
| |
| |
Justifying consent transactions: consent as waiver | |
| |
| |
Scope and standards | |
| |
| |
Consent transactions: standards for communication | |
| |
| |
Consent transactions: commitments | |
| |
| |
Conclusion: consent in practice | |
| |
| |
| |
Informational privacy and data protection | |
| |
| |
Informational privacy | |
| |
| |
Informational rights and obligations | |
| |
| |
Informational privacy as a right over content | |
| |
| |
Data protection legislation: second-order informational obligations | |
| |
| |
Rethinking informational privacy | |
| |
| |
Confidentiality: regulating communicative action rather than information content | |
| |
| |
Conclusion | |
| |
| |
| |
Genetic information and genetic exceptionalism | |
| |
| |
Questions about genetic information | |
| |
| |
Genetic privacy and genetic exceptionalism | |
| |
| |
Is Genetic information contained within DNA? | |
| |
| |
Conclusion | |
| |
| |
| |
Trust, accountability and transparency | |
| |
| |
Consent, paternalism and trust | |
| |
| |
Placing and refusing trust intelligently | |
| |
| |
Accountability, and trustworthiness | |
| |
| |
Accountability, trustworthiness and trust in biomedicine | |
| |
| |
Accountability with transparency | |
| |
| |
| |
The structure of accountability | |
| |
| |
Some conclusions and proposals | |
| |
| |
Informed consent and epistemic norms | |
| |
| |
Informed consent and individual autonomy | |
| |
| |
Informed consent as waiver | |
| |
| |
Practices and policies for informed consent | |
| |
| |
After rethinking: the possibility of change | |
| |
| |
Bibliography | |
| |
| |
Institutional sources and documents | |
| |
| |
Index | |