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Understandings of cancer genetics : the case of colon cancer Small, R. Dan

Abstract

More men and women die every year from colorectal cancer (CRC) in Canada than from any other cancer with the exception of lung cancer (Canada 1997). The focus of this study is on the most common form of hereditary cancer in both men and women: hereditary nonpolyposis colorectal cancer (HNPCC) (Kinney, et al. 2000). The fundamental thesis of this study is that individuals who are genetically at risk for HNPCC employ healing emplotment, a narrative strategy, for constructing their autobiography and managing the lifelong threats to themselves posed by this unique cancer. This concept builds on other work in medical anthropology on illness narratives and therapeutic emplotment that focuses on the ways that patients and practitioners utilize narrative to interpret illness and therapies (DelVecchio-Good, et al. 1994; Good and Good 1994; Gordon and Paci 1997; Kleinman 1988; Mattingly 1989; 1994; 1998; Saris 1994; 1995; 1996). I argue that personhood is at the very heart of the healing process. Personhood is as a process for describing the ongoing negotiation between the self as the centre of experience and the cultural forces that surround it. Furthermore, just as Bourdieu (1990; 1995; 1999) discusses forms of symbolic capital in society, I have expanded upon the notion by recognizing the role of psychological and emotional resources in the concept of emotional capital. Emotional capital flows from personal connections with others: lovers, family, friends and it holds absolute value relative to all other forms of capital during fateful moments. The interviews in this study indicate that emotional capital is a fundamental part of individuals' interpretations of their experience of genetic risk. Using ethnography and open-ended interviews with 33 individuals from 15 families at risk for HNPCC, this study examines the unique aspects of hereditary colon cancer and investigates the dynamic process people engage in to address the social and clinical threats posed by HNPCC. As well, 18 medical practitioners, primarily specialists in oncology, were also interviewed in order to obtain insight into clinician understandings of HNPCC and the relationship between medicine and clinical genetics.

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