Women's interest in genetic testing for breast cancer susceptibility may be based on unrealistic expectations

We report on results of an interview study assessing women's attitudes towa rd and hypothetical interest in genetic susceptibility testing for breast c ancer. Data are from 246 interviews with women of varying ethnicity (Africa n American, European American, Native American, and Ashkenazi Jewish), fami ly history of breast cancer (negative, positive, and borderline), and educa tional level. Semistructured interviews included questions on general healt h beliefs; attitudes, experiences, and concerns about breast cancer; and hy pothetical interest in genetic testing. Influence of specific test characte ristics was assessed with 14 Likert scales varying negative and positive pr edictive value, timing of disease, possible medical interventions following a positive result, Results reported include both statistical and qualitati ve analysis. We found that women had a high level of interest ill testing w hich, in general, did not vary by ethnicity, level of education, or family history, Interest in testing appeared to be shaped by an exaggerated sense of vulnerability to breast cancer, limited knowledge about genetic suscepti bility testing, and generally positive views about information provided thr ough medical screening. However, study participants were most interested in a test that didn't exist thigh positive predictive value followed by effec tive, noninvasive, preventive therapy) and least interested in the test tha t does exist (less than certain positive predictive value, low negative pre dictive value, and limited, invasive, objectionable therapeutic options), O ur data suggest that without a careful counseling process, women could easi ly be motivated toward interest in a test which will not lead to the diseas e prevention they are seeking. (C) 2001 Wiley-Liss, Inc.