Modern Genes : Body, Rationality and Ambivalence

Sammanfattning: The main objective of this ethnological thesis is to investigate the linkage between everyday life with a genetic disease and intrinsic patterns of modernity. The thesis is a compilation thesis that contains four individual articles each addressing the everyday experience of a genetic disease from different angles, with different research questions and theoretical presumptions. Each of the four articles has performed ethnographic investigations, mainly through semi-structured interviews, with individuals who in various ways are affected by Huntington’s disease, which is a genetic brain disease. The four individual articles show that the experiences of the affected individuals that were captured in the interviews were not the only representations of Huntington’s disease. Instead, these experiences were challenged by representations offered by genetic science, which provided representations of our body that depart from the way we ordinarily experience and perceive our bodies in daily life. They were also the legal representations used by the welfare system in order to evaluate the everyday situation of the participants when they applied for assistance from the welfare system. The presence of these two institutions, science and the welfare society, led to the notion of modernity, since these two institutions can be characterized as systems through their use of instrumental rationality for achieving their objectives. This divergence between the lifeworld of the affected individuals and the representations brought forward by the system gave rise to ambivalences that offered forms of cultural and social change. These forms of cultural and social change were seen in conjunction to so-called “Third spaces” which can be characterized as a site where the sharp distinction between lifeworld and system becomes less sharp and less dichotomous and where new forms of engagements can be established as a consequence of the sort of empowerment and negotiations take place. These “Third spaces” will then be important sites in which the implications of the scientific development within genetics and the biomedical sciences take shape in society. By investigating the link between everyday experiences with general cultural patterns of modernity, the thesis does then provide a deeper knowledge upon the interactions between genetic science, culture and society.