Consumer knowledge and opinions of genetic testing for breast cancer risk

Abstract

Although clinical evidence shows the value of genetic testing for breast cancer risk, consumer opinion about the test—and its outcomes—may differ. We conducted focus groups with white and black women to assess consumer opinions about genetic testing for breast cancer risk. We conducted 5 focus groups with women between the ages of 30 and 79. Participants were not selected for personal or family history of breast cancer. The findings of these focus groups suggest that consumers' understandings of risk, genetics, and genetic testing can differ considerably from clinical definitions and interpretations. Clinical information appeared to be interpreted by participants based on personal experience and beliefs about genetics and disease causation. Our findings also suggest that many consumers have incomplete or erroneous knowledge about genetic testing (eg, whether the test should be repeated annually). Participants gave greater attention to the emotional and social consequences of positive test results than to their physical outcomes, suggesting that emotional and social issues may be more salient in decision making about whether to be tested. Sensitivity to the possibility that consumers may use nonclinical criteria to assess the value of genetic testing can help clinicians counsel women about testing and what actions to take after testing.