Narratives of Health Protection in Families with a Late-Onset Kidney Disease: Re-Defining Governmentality and Responsibility for Health in the Era of the ‘New’ Genetics

Abstract

Genetic medical technologies have increased the possibilities for detecting future illness in those who appear healthy and asymptomatic. These developments broaden the scope of medicine, complicating distinctions between health, illness and disease. Genetic counselling practice extends health promotion seeking to ‘inform’ individuals of their own risks so that they can minimise possible negative implications for their own lives (Lupton 1995). An extension of disease prevention has been associated with a shift in health such that health is no longer a given but has to be achieved by individuals. While post-structuralist accounts have positioned health promotion as part of an increasing self-surveillance of health, they have rarely based these accounts on empirical studies of individuals’ experiences. This paper explores how ‘early’ diagnosis positions people as ‘at-risk’. Findings inform narratives of social change centred on the individualisation of health, the extension of self-surveillance and the blurring of boundaries between health and disease. Narrative accounts from interviews and observations of clinical consultations with 18 adults who had been told that they had inherited a late onset, degenerative kidney disease (Autosomal Dominant Polycystic Kidney Disease) are used to explore how individuals discursively achieve health and appropriate health protection. This analysis challenges the idea that knowledge of genetic aetiology will reduce individual responsibility for health. Rather than a grand shift to a continuum of health and the disappearance of ‘old’ binaries, these participants appear to use the health/disease dualism to re-position themselves with respect to risk on a moment-by-moment basis.