Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency [Book Review]
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
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Medicine Studies 1 (2):113-129 (2009)
There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling ethos; (iii) NDP was historically a defensive tool that protected the interests of geneticists against social criticism and against litigation; (iv) NDP falsely assumes individual responsibility and hides the shared responsibility of other social actors. The paper argues that a serious understanding of moral space, which people need in order to make ‘their own’ decisions, leads to a necessarily relational concept of agency. The positive counterpart of NDP is to allow a space for agency. Allowing agency implies offering the kind of support that the decision-making person really needs. To make a good decision about personal genetics implies being empowered to act as a contextually sensitive person who is aware of relationships and corresponding responsibilities
|Keywords||Genetic counselling Genetic decisions Non-directiveness Agency Gene tests Disclosure Genetic information Informed consent Genetics|
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References found in this work BETA
Bruno Latour (1999). Pandora's Hope: Essays on the Reality of Science Studies. Harvard University Press.
Martha Craven Nussbaum (1990). Love's Knowledge: Essays on Philosophy and Literature. Oxford University Press.
Margaret Urban Walker (1998). Moral Understandings: A Feminist Study In. In Stephen Everson (ed.), Ethics. Cambridge University Press
Aristotle (2004). The Nicomachean Ethics. Penguin Books.
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