The Connected Self : the Ethics and Governance of the Genetic Individual.
Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice.
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Full Text (via ProQuest) |
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| Main Author: | |
| Format: | eBook |
| Language: | English |
| Published: |
Cambridge :
Cambridge University Press,
2012.
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| Series: | Cambridge bioethics and law.
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Table of Contents:
- Cover; Contents; Preface; Acknowledgements; Introduction; The claims of the connected self; The structure of the connected self; 1 The individual self and its critics; Introduction; The individual, separate self; Feminism; Virtue ethics; Conclusion; 2 The individualist assumptions of ethical frameworks; Promotion of a narrow individual model; Development of the individual model; Duty to the individual patient; Methodology; Simple and easy; The choice model; The limits of choice; Fear of paternalism; Conclusion; 3 The genetic self is the connected self; Introduction.
- Genetic material and informationValuable material and information; Genetic information as shared information; The individual self (again); Personalised medicine; Genetic information is identifying; Confusions regarding anonymisation; Possibilities of identification; Genetic exceptionalism; The extent of sharing; Conclusion; 4 The failures of individual ethics in the genetic era; Introduction; Informed consent; Respecting connected others; Group goods; Informed consent and biobanking; Future-orientated; A research resource, not a research project; Withdrawal; Broad consent; Beyond consent.
- ConfidentialityThe shared nature of genetic material: implications; The identifying nature of genetic material: implications; The Icelandic example; Conclusion; 5 The communal turn; Introduction; The "communal turn" in bioethics; Emerging models in the communal turn; Expanding consent and to families and groups; Group consent in research; Family consent; Problems with group consent; Collapses into individual consent; Consenting for the group; Protecting vulnerable individuals in groups; Group consent is still consent; Exploitation; Conclusion; 6 Developing alternatives: benefit sharing.
- IntroductionBenefit sharing; Development of benefit sharing; Types of benefit sharing; Shared patenting: the PXE case; Strengths of benefit sharing; Recognises rights and interests of connected persons; Has the potential to address the "one-off" problem; Flexible and appropriate; Overcoming some worries of inducement to participate; Weaknesses of benefit sharing; Complexity; Global/local tension; Property and commodification; Conclusion; 7 Developing alternatives: trust; Introduction; The trust model; The development of "trust" from "gift"; Versions of trust; The shareholder model.
- The stakeholder approachUK Biobank; Strengths of trust; Includes different groups and individuals; Not "one-off"; Control without ownership; Weaknesses of trust; Collapse into broad consent; Mass withdrawal; Conclusion; 8 The ethical toolbox part one: recognising goods and harms; Introduction; Groups and vulnerable individuals; Types of groups and the goods which attach to them; Human rights framework; Corporate groups and their goods; Collective groups and their goods; Conclusion; 9 The ethical toolbox part two: applying appropriate practices; Introduction; The ethical toolbox method.