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Qualitative Health Research
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Genetic Testing for Hereditary Breast and Ovarian Cancer: Responsibility and Choice

Lori d'Agincourt-Canning

BC Cancer Agency, Hereditary Cancer Program.

Genetic testing for hereditary breast-ovarian cancer has become an important part of clinical genetics practice. Although considerable work has focused on the psychological impact of this technology, there has been little research into the moral implications of genetic information on hereditary cancer families. In this article, the author examines moral issues related to individuals' decisions to seek or decline testing. In-depth interviews with 53 participants make up the core of the research. Analysis of participants' accounts illustrates how the decision to be tested (or not) interconnects with moral agency and aspects of self (embodied, familial-relational, and civic self). The findings form the foundation for inquiry into conceptualization of moral responsibility, autonomy, and choice. They also provide insight that might assist clinicians to understand more fully the needs and responses of those who seek genetic testing for hereditary breast-ovarian cancer.

Key Words: moral agency • responsibility • choice • autonomy • genetic testing • hereditary cancer

Qualitative Health Research, Vol. 16, No. 1, 97-118 (2006)
DOI: 10.1177/1049732305284002
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