Abstract

In line with studies in sociology of genetics on the social implications of genetic information, this article focuses on the choices and responsibilities that arise when genetics, more specifically the presence of a BRCA mutation in the family, enters individuals’ daily lives. In order to study the lived experiences with genetics, we conducted 28 semi-structured in-depth interviews with Belgian BRCA mutation carriers. Based on Lemke’s (2013) dimensions of ‘genetic responsibility’ – that is, ‘responsibility for the self’, ‘informational responsibility’ and ‘reproductive responsibility’ – the article examines how people with a BRCA mutation handle making ‘responsible choices’ and how they learn to cope with this in their lives. The results of the study show that respondents wrestle with the various options, dilemmas and limitations involved in the responsibilities tied up with genetic knowledge. Not only is taking responsibility for every sole dimension a burden, but the combination of responsibilities, or more precisely the lack of a feasible combination, appears to be a complex task. In addition, this worrying about genetics apparently is an unceasing chore. Sometimes, individuals manage to accommodate genetics in their lives, but at other times they are unavoidably confronted with it again and forced to make new choices. Respondents consider genetics as a constant theme impinging on their lives. The social dimensions of dealing with genetics give rise to many concerns and they require a serious amount of human effort to socially absorb that knowledge and to accommodate it.

How to Cite:

Wauters, A. & Van Hoyweghen, I., (2017) “Verantwoordelijke keuzes in het licht van genetische kennis: een sociologische studie naar het leven met een genetische aanleg bij Belgische BRCA-mutatiedragers”, Sociologos 38(4), 342–363. doi: https://doi.org/10.21825/sociologos.86956