The Connected Self: The Ethics and Governance of the Genetic IndividualCurrently, 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. |
Contents
Introduction | 1 |
1 The individual self and its critics | 6 |
2 The individualist assumptions of ethical frameworks | 15 |
3 The genetic self is the connected self | 30 |
4 The failures of individual ethics in the genetic era | 62 |
5 The communal turn | 88 |
benefit sharing | 102 |
trust | 124 |
recognising goods and harms | 146 |
applying appropriate practices | 163 |
10 Possible futures | 179 |
| 182 | |
| 200 | |
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The Connected Self: The Ethics and Governance of the Genetic Individual Heather Widdows Limited preview - 2013 |
Common terms and phrases
accessed 27 March anonymised argue autonomy benefit sharing agreement bioethics broad consent Canavan Canavan disease chapter claims communities of circumstance concerns confidentiality conflict connected considered context databases debate Declaration of Helsinki defined developed difficult discussed disease groups donors ensure ethical frameworks ethical practice ethical toolbox ethics and governance exploitation final first fit focus future gene genetic information genetic material genetic research genome group consent group rights harms herd immunity HUGO identified important indigenous groups individual choice model individual model individual’s informed consent injustices instance issues Laurie Manson and O’Neill medical ethics Murdoch nature of genetic on—going participants particular patient personalised medicine persons population possible potential problematic problems profit recognise respect risk samples scientific shared nature significant simply social capital specific stakeholder model sufficient tissue Titmuss trust model UK Biobank virtue ethics vulnerable Widdows