Between Ethics and Aesthetics – Reception of Genetic Information and Narrative Experience

Abstract

"In a clinical context, the communication of genetic information is an event that can give rise to unexpected situations for health professionals. Several empirical studies have shown that, despite being presented with “good” presymptomatic test results, some patients develop negative feelings, depression, which can in extreme cases lead to suicide attempts. Here, genetic information takes full meaning when considered in a personal narrative. In this presentation, we would like to look at the specificities of this narrative experience in the light of works on the aesthetics of everyday life, with a particular focus on the works of John Dewey. For Dewey, the aesthetic experience is possible in all aspects of people’s daily lives, including clinical experience. In this case, “aesthetics” appears in the sensitive character of an experience rather than in a specific type of object. Through the examination of this thought, we will ask to what extent we can speak of an aesthetic experience when thinking of the communication of genetic information, and how this consideration can help ethical reasoning. We will begin by examining how the moment of the communication of genetic information to patients by the clinician can constitute a process of defamiliarization of everyday life. This will lead us to look at patients’ accounts of genetic information reception and to analyse how these appear to be more than mere testimonies about the experience of pathologies, but a means by which the patient is confronted with difficult experiences in order to reformulate them. "