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Experiential knowledge, moral agency and genetic testing for hereditary breast/ovarian cancer d’Agincourt-Canning, Lorraine

Abstract

This study examined the influence of genetic testing for hereditary breast/ovarian cancer on individuals' understandings of self and moral agency. Using an ethnographic design, the investigator conducted in-depth interviews with 53 individuals (45 female, eight male) from families at high-risk for hereditary breast/ovarian cancer. Working closely with genetic counsellors and geneticists at the Hereditary Cancer Program (HCP), BC Cancer Agency, she also undertook approximately 50 hours of fieldwork as an observer in genetic counselling sessions. In addition, she regularly attended clinical review and steering meetings of the HCP. The research focused primarily on the accounts of at-risk individuals who underwent testing and those who were eligible but declined testing. The impact of genetic information was examined through three interrelated aspects of self: the embodied, relational and social self. Most participants linked their positive results to becoming more aware of their embodied selves. The information was generally viewed as enabling; it allowed participants to take measures (surveillance or prophylactic surgery) to confront the disease. However, for a small minority of women knowledge about their genetic risk had a profound and limiting effect on their agency. Rather than giving them a sense control, they saw little opportunity to fight the disease. They were overcome by thoughts of their embodied risk and a dire future from which they could not escape. A few others were thrust into a state of uncertainty. These participants did not view themselves as risk-free, yet neither did they perceive themselves as unhealthy. While worrisome at times, knowledge of their mutation status became part of their awareness, part of their routine lives and ultimately part of who they were.

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