Abstract
In cystic fibrosis, the identification of genetic variability (mutations) of CFTR - which differs in terms of protein synthesis, trafficking, stability, and function and its implications for gene dysfunction - is the main basis for the development of modulating drugs and innovations in therapy. Such innovations promise an increase in quality life expectancy in the era of high-tech biomedicine. The argument of this article is based on the idea that power-knowledge through knowledge of mutation fosters the construction of identity in the “genetic self”. Methodologically, we assume Critical Discourse Analysis (CDA), interested in the discursive formations of social actors, as a community of experts with diverse links in the field of cystic fibrosis. We discuss how socio-historical and cultural positions, in correspondence with social practices, convey the centrality of the debate on the right to life in the era of precision medicine. The shared experience of CF, as a rare health condition, points to the (re)signification of citizenship around the bios.
Keywords:
Cystic fibrosis; Biocitizenship; Precision medicine
Thumbnail
