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 from families at high-risk for hereditary breast/ovarian cancer. Working closely with genetic counsellors and geneticists at the Hereditary Cancer Program , 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 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. ;Genetic testing is enacted within a discursive practice that gives primacy to individualistic models of autonomy, rational decision-making and choice. Yet, the research showed that a relational concept of autonomy provides a better framework for understanding some of the complexities raised by genetic testing for hereditary cancer. Participants' decisions to seek testing reflected practical concerns about their health, but the self in relation to others was also instrumental in making these decisions. Some women believed testing could give their daughters, sisters and other female relatives information that would be useful for them. Others, referring to their own experiences with breast/ovarian cancer, hoped that genetic information would allow family members greater control over the disease. Many participants also wished to be tested in order to provide information that might benefit medical research and society more broadly. Although some participants spoke of individual choice, the language of responsibility coexisted and often prevailed over that of individual rights. Responsibility to others was not seen as an abstract obligation, but as a complex expression of self-governance through which people expressed their sense of moral agency. ;The investigator concluded by discussing the clinical import of the research findings, especially with respect to genetic counselling practices and informed consent. She called for more ethnographic work examining the impact of genetic information on adolescents and young adults. Lastly, she emphasized the value of integrating empirical studies with ethical assessment of new medical technologies in order to build a bioethics that is more sensitive to the ethical concerns which structure people's everyday lives