Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency [Book Review]

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
Categories (categorize this paper)
DOI 10.1007/s12376-009-0023-7
 Save to my reading list
Follow the author(s)
My bibliography
Export citation
Find it on Scholar
Edit this record
Mark as duplicate
Revision history Request removal from index
Download options
PhilPapers Archive

Upload a copy of this paper     Check publisher's policy on self-archival     Papers currently archived: 16,667
External links
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
Through your library
References found in this work BETA
Margaret Urban Walker (1998). Moral Understandings: A Feminist Study In. In Stephen Everson (ed.), Ethics. Cambridge University Press

View all 10 references / Add more references

Citations of this work BETA

No citations found.

Add more citations

Similar books and articles
Bill Shaw (1995). Virtue Ethics and Contractarianism. Business Ethics Quarterly 5 (2):297-312.
Fuat S. Oduncu (2002). The Role of Non-Directiveness in Genetic Counseling. Medicine, Health Care and Philosophy 5 (1):53-63.

Monthly downloads

Added to index


Total downloads

6 ( #336,406 of 1,726,249 )

Recent downloads (6 months)

1 ( #369,877 of 1,726,249 )

How can I increase my downloads?

My notes
Sign in to use this feature

Start a new thread
There  are no threads in this forum
Nothing in this forum yet.