The Connected Self :The Ethics and Governance of the Genetic Individual ( Cambridge Bioethics and Law )

Publication subTitle :The Ethics and Governance of the Genetic Individual

Publication series :Cambridge Bioethics and Law

Author: Heather Widdows;  

Publisher: Cambridge University Press‎

Publication year: 2013

E-ISBN: 9781316896136

P-ISBN(Paperback): 9781107008601

P-ISBN(Hardback):  9781107008601

Subject: R-052 Medical Ethics

Keyword: 法律

Language: ENG

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Description

Heather Widdows suggests new ethical frameworks for genetic governance, to replace those that offer little protection and permit significant injustice. 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. 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. 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. 1. The individual self and its critics; 2. The individualist assumptions of bioethical frameworks; 3. The genetic self is the connected self; 4. The failures of individual ethics in the genetic era; 5. The communal turn; 6. Developing alternatives: benefit sharing; 7. Developing alternatives: trust; 8. The ethical toolbox part one: recognising goods and harms; 9. The ethical toolbox part two: applying appropriate practices; 10. Possible futures. 'Widdows' argument … not only clearly demonstrates the need for new ways of thinking about contemporary issues in genetics and genomics, but also highlights the ways in which ethics itself co-evolves with science.' Ruth Chadwick, Distinguished Research Professor, Cardiff University and Director, Cesagen 'If bioethics is to be less blinkered, it needs a new approach - one that collects the required 'tools' and then applies them in a way that is responsive to the full range of material harms and goods. The Connected Self is a compelling read.' Roger Brownsword, Kings College London and Chair, UK Biobank Ethics and Governance Council 'With a battery of philosophical arguments, Widdows soon convinces the reader that our current ethical framework, the choice model, has to go … Informative, scholarly and yet extremely accessible.' Lisa Bortolotti, Birmingham University 'In setting out how genetics makes ethical individualism redundant - itself an important and timely argument - Heather Widdows at the same time puts neo-liberal 'morality' firmly in its place.' Bob Brecher, University of Brighton 'Provides a strong and urgently needed call to 'clean up our act' as regards the ethical governance of genetics … Reading this book reminded me why I became an ethicist.

Chapter

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 information

Valuable 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

Confidentiality

The 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

Introduction

Benefit 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 approach

UK 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

Advantages of the ethical toolbox

Recognises the connected self of the genetic era

Works over time

Recognises goods of all types

Control without property

Contributes to social capital and engenders trust

Disadvantages of the ethical toolbox

Overly complex, bureaucratic and cumbersome

Paternalistic

Fails to protect individuals

Conclusion

10 Possible futures

Bibliography

Index

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