Looking forward, looking back: the narrative of testing positive to Huntington's Disease.

ABSTRACT

Predictive testing for Huntington's Disease produces new subjectivities. In addition, receiving a gene-positive result induces new relationships towards one's body, close family members, and one's future. In this article I examine the story of one woman who, following a gene-positive test result, described her search for 'signs' of disease, as well as ways in which to accommodate her new 'status'. The narrative draws attention to how people who undergo a genetic test make sense of the anticipation of illness, how they experience the body in relation to that possibility, and how they negotiate the tension between the abstraction of genetic 'truths', and the materiality of a body.

KEY WORDS

Huntington's Disease; predictive testing; narrative; sociology; Foucault

Introduction

The biomedical and psychosocial literature on people's experience of being 'at risk' for the hereditary neurological condition, Huntington's Disease (HD), reports that they live 'with ambiguity and uncertainty' (Tyler 1996:154). The uncertainty, however, extends to those people who have tested positive to the HD gene but are not symptomatic. A common, and perhaps unsurprising outcome, is for analysands to begin searching for signs and symptoms of HD, and to believe they may already be symptomatic (Bloch et al 1992; Whalin et al 1997; Decruyenaere et al 1996). Whilst not everyone responds to an unfavourable test result in the same way, the sense of precariousness about one's state of health following a gene-positive test result can in fact induce a variety of reactions, emotional turmoil and psychological repercussions (Taylor and Myers 1997; van der Steenstraten et al 1994). Inquiries into the psychological implications of testing are, however, generally concerned with estimating the risk impoverishing a person's quality of life, or with the incidence of adverse or 'catastrophic events', ranging from avoidance and denial, to breakdown in family relationships, or suicide Codori et al 1994; Quaid and Wesson 1995; Tibben et al 1997; Lawson et al 1996; Almqvist et al 1999). However, with few exceptions (Cox 2003; Cox and McKellin 1999), there has been little sociological inquiry into how the 'at-risk' status is experienced as 'embodied or corporeal risk' (Kavanagh and Broom 1997) by people with a family history of HD, or how becoming 'symptomatic' is produced and made 'real' and meaningful through their relations with others.

In this paper I will explore the story of one woman, 'Sarah', who described her lived experience of being 'gene-positive' following a predictive test for HD. Drawing on Foucault's notions of the clinical gaze and surveillance, will consider how new 'identities' such as 'symptomatic' emerged at the intersection between the body-self, the gaze and the people whom the informant perceived to be key figures contributing to her experience. Importantly, a gene-positive result induced a routine search for signs and symptoms requiring a new relationship toward her own body which was both alienating and accommodating. Sociologically, explorations into how people search for 'signs' of HD following a gene-positive test result can shed light on how they make sense of the anticipation of illness, how they experience the body in relation to that possibility, and how they negotiate the tension between the abstraction of genetic 'truths', and the materiality of a body which speaks its own truths in the absence of a medical diagnosis of existing disease.