Providing solutions--defining problems: the imperative of disease prevention in genetic counselling

Abstract

Common sense states that problems make people look for solutions. This article proposes the contrary, i.e. that solutions provide the framework within which certain problems can be stated and handled. Drawing on observations of cancer genetic counselling in Denmark and official recommendations concerning the practice of genetic counselling, this article explores how the new prophylactic possibilities become the lens through which risk factors are identified and defined as problems that require action. In particular, the question of how new possibilities to prevent hereditary disease challenge the traditional non-directive ethos of clinical genetics provides the occasion to analyse governmentality processes in clinical genetic dialogues. The article argues that an imperative of choosing disease prevention in genetic counselling transforms the notion of non-directiveness as well as the notions of autonomy and informed consent. The transforming event is the transmission of expert knowledge on genetic risk from counsellor to counsellee. This process of knowledge transmission creates autonomous individuals who, through the medium of choice, consent voluntarily to take personal responsibility for themselves and their relatives. Conceived as a health technology, genetic counselling is a practice through which hegemonic knowledge claims about saving lives by acting responsibly is created. Disease prevention as the solution to increased risks comes to stand out as the right way of relating to oneself, the family, and society.