Genetically exceptional?: women's experiences of being at risk of hereditary breast and ovarian cancer

Abstract

This thesis questions whether the experiences of women at-risk of hereditary breast and ovarian cancer (HBOC) might be genetically exceptional. Using a combination of retrospective in-depth interviews with women at-risk and observations of consultations carried out at a regional specialist centre, this research questions the genetic exceptionalism thesis and the argument that the experiences and decisions that women at-risk of HBOC make, are unique and thus different compared to those of women diagnosed with non-genetic, sporadically developing breast or ovarian cancer. In examining the arguments for and against genetic exceptionalism, this thesis revisits the medical sociological literature on the doctor-patient relationship and discusses the difficulty in establishing who should be recognised to be the patient within the genetic consultation, the decision to undergo genetic testing and the decision to have risk-reducing, prophylactic surgery. The resulting analysis recognises the data to be moral accounts, constructed by research participants so that their utterances would be perceived in a particular manner. For example, while justifying their reported actions, participants were attempting to portray themselves as moral, responsible citizens, mothers, patients and women. In addressing these four aspects of women’s HBOC experiences, this thesis concludes that there is little unfamiliar to medical sociologists about the experiences described and the rationales given by the participants. Such data lends itself to the position where the notion of genetic exceptionalism cannot be supported. Consequently, the thesis concludes that the experiences of women at-risk of HBOC seem to be little different from other, non-genetic health experiences