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 by Lucy Brindle University of Southampton Sociological Research Online 14(5)23 <http://www.socresonline.org.uk/14/5/23.html> doi:10.5153/sro.2060 Received: 23 Jun 2009 Accepted: 22 Nov 2009 Published: 30 Nov 2009 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. Keywords: Governmentality; Risk; New Genetics; Responsibility for Health; Agency; Normality; Early Diagnosis Responsibility for health 1.1From a perspective within which health and illness are not properties of individuals to be treated as given but are claims to be sustained 'against the background of competing moral demands' (Radley and Billig, 1996), health status is always potentially fluid and negotiable. However the increasing use of assessment of risks to health, and pre-symptomatic diagnosis, also provides the possibility for health status to be negotiated around the likelihood and location in time of future events. This paper took, as its point of departure, theory proposing that within local practices of self, individuals are increasingly being formulated as having responsibility for the reduction of their own health risks (Lupton, 1993) and an interest in the implications of having a diagnosis of ADPKD, a late-onset hereditary kidney disease, for the positioning of selves and others as responsible for health. 1.2 Within a discourse of risk associated with the development of public health, risk becomes a consequence of 'life style' choices made by the individual (Lupton, 1993). The risk discourse relating to public health can be described as an extension of the idea, characteristic of a 'risk society' (Beck, 1992), that individuals should attempt to protect themselves against possible future mishaps and plan for the future. The extension of this discourse, and the development of public disease prevention practices, have been associated with a shift in health such that health is no longer a given but has to be achieved by individuals (Lupton, 1995). The increasing use of risk assessments and provision of diagnoses which predict future ill health might be expected to further disturb distinctions between health and disease, provide ambiguous health identities and re-define responsibilities for health.