ABSTRACT
This chapter focuses on the patients’ perspectives in genetic diagnosis. Patients’ accounts give an insight into decision situations that might differ significantly from the doctors’, counsellors’ or ethicists’ perspectives. As genetic testing is a rapidly growing field of molecular biomedicine, it is likely that more and more patients will be facing situations in which they have to decide for or against a genetic diagnosis. This chapter is based on empirical data from a qualitative study that was carried out in Switzerland between 2002 and 2005. An interpretative phenomenological analysis of our interview data showed that patients rarely perceive their test decision as a single discrete decision. Rather, they use time to protect their moral agency (Scully et al. 2007; Scully 2006; Rehmann-Sutter 2006 and 2008). In their interview stories they talked about decision processes, steps and time spans. In addition they emphasized the difficulty and absurdity of some of the test situations (Porz et al. 2008). And they particularly emphasized the role of their family and friends, thus making it clear that a decision to take a genetic test is linked to a number of contextual factors.
