Evaluating data from newborn screening programs - Georgia, 1998

Abstract

Testing for mutations in hereditary breast/ovarian cancer genes (BRCA1/BRCA2) is appropriate for a limited group of high-risk individuals, such as some breast cancer survivors. It is not known if survivors obtain information regarding genetic testing or whether physicians play a role in the testing decision process. Our objectives were to determine if high-risk survivors speak with physicians and relatives about BRCA genetics, and to determine their knowledge, testing intentions, and preferred information sources. We conducted a population-based cross sectional study in 1/99 at Group Health Cooperative. All 276 female current enrollees initially diagnosed with breast cancer 5-10 years prior to 6/30/98 and 40-49 years old at diagnosis were mailed a survey. Of 217 respondents, 8% spoke with ph y sicians and 53% spoke with relatives. On average, women correctly responded to 2 of 7 true/false que s tions. Respondents who spoke with physicians had higher knowledge scores than those who did not (p<.001). Respondents preferred written materials (80.6 %) and discussions with physicians (79.8%) for BRCA information. In summary, survivors have limit e d BRCA knowledge, t hough they are discussing genetics with relatives. Physicians currently give little input regarding BRCA testing, but survivors would consider their involvement helpful.