A gift or a yoke? Women’s and men’s responses to genetic risk information from BRCA1 and BRCA2 testing

Abstract

This qualitative study explored the impact of genetic risk information from BRCA1/2 testing on individuals' subjective understandings of self and self-identity. In-depth interviews were conducted with 39 participants (34 women and 5 men) who had received test results from BRCA1/2 testing. Themes emerging from qualitative data analysis revealed that participants linked their positive results to becoming more aware of their physical selves (embodied self), their selves in relation to family (familial-relational self) and their selves in relation to wider kinship or social groups (social self). Genetic 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 of control, they saw little opportunity to fight the disease. For a few people, identification of a genetic mutation thrust them into an uncertain state, that is in a position of being neither ill nor completely well. In one case, BRCA information led to a disruption of social identity. Further work is needed to assess the impact of age and life stage on psychological responses to genetic information on cancer susceptibility.