Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency
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- Rehmann-Sutter, C. Medicine Studies (2009) 1: 113. doi:10.1007/s12376-009-0023-7
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.
KeywordsGenetic counsellingGenetic decisionsNon-directivenessAgencyGene testsDisclosureGenetic informationInformed consentGenetics
Pre-implantation genetic diagnosis