Teknomoralsk endring : Huntingtons sykdom, nye gentester, og endringer i debatten om retten til ikke å vite
Abstract
Moral intuitions, judgments, and justifications may change over time. This thesis discuss the relation between moral change and technological change in a particular case. I present the bioethical debate on the right not to know as discussed in the context of Huntington’s disease on the one hand and in the context of direct-to-consumer tests on the other hand. I compare the bioethical debates «then and now», as a way of mapping the differences in normative argumentation. As a tool to understand these differences and changes, I will use Tsjalling Swierstra’s concept of technomoral change. The questions of the theses are the following: How has our understanding of, and justification for, a right not to know about genetic information changed from the development of genetic testing for Huntington’s disease to today’s direct-to-consumer genetic testing? Can Swierstra’s conceptualization of technomoral change help us understand and discuss such chan ges? I argue that this is the case, that our normative justifications of a right not to know has been subject to technomoral change, and that Swierstra offer tools for meaningful discussion of such changes, and in effect, a way of better handling such changes. The structure of my argument is built upon the interplay of two discussions: Swierstra’s meta-discussion on technomoral change, and a substantial bioethical discussion on the right not to know in what I refer to as two technomoral periods.