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A gift or a yoke? Women’s and men’s responses to genetic risk information from BRCA1 and BRCA2 testing
Author(s) -
D’AgincourtCanning L
Publication year - 2006
Publication title -
clinical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.543
H-Index - 102
eISSN - 1399-0004
pISSN - 0009-9163
DOI - 10.1111/j.1399-0004.2006.00720.x
Subject(s) - agency (philosophy) , genetic testing , social psychology , identity (music) , kinship , sense of agency , psychology , qualitative research , personal identity , developmental psychology , medicine , self , sociology , social science , physics , anthropology , acoustics
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.