BRCA testing in underserved women: a qualitative study of intepretations and impacts.

Abstract

Abstract Abstract #3109 Background: As BRCA testing becomes more available to underserved populations, it is important to understand how the BRCA testing process is interpreted by these patients and their families. It is also essential to study the medical and psycho-social effects of BRCA testing for underserved populations. This study aims to explore the impact of BRCA results and the process of BRCA testing in underserved women.
 Methods: Underserved women at San Francisco General Hospital (SFGH) who underwent BRCA testing received individual, in-depth, 1-2 hour, semi-structured interviews by a medical anthropologist. Interviews addressed: personal background, initial referral, delivery of test results, understanding of test results, sharing of test results and impact of testing and results on the patient and her family. Interviews were transcribed verbatim, coded using a qualitative data analysis system (Atlas-ti), and analyzed by two authors. Participants were chosen to include the diverse range of patients at SFGH.
 Results: Of 130 women at SFGH who received BRCA testing, 8 to date have been interviewed (age 35-56). Four had breast cancer. BRCA results include: 4 negative, 2 variant, and 2 positive. Six participants were white; 2 African American. Preliminary data analysis shows that the idea of genetic testing and counseling for breast cancer was completely new at the time of referral for most participants. Participants with breast cancer wanted testing for their children and siblings. "I definitely wanted to know…so that we would have information as far as my son and my sister, and we would have a heads up and know, because early detection is what saved my life." Participants who did not have cancer but who perceived a lot of cancer in the family were interested in and reassured by the genetic counseling/testing experience. “I've been held captive with the word “cancer” all my life." Those with inconclusive results (uninformative negative and variant) had a limited understanding of the implications of their test results for their cancer risk and that of their relatives and struggled with what to communicate to family members. An affected women with negative results said, "With my sister …we have the same parents, but if mine came back negative, I don't know if that means she's totally out of the dark for herself." Participants consistently had positive feelings about their experience with genetic counseling and testing.
 Conclusions: Given our sample size and methodology, it is not appropriate to generalize. But, this preliminary data suggests that many variables relate to individual understanding and interpretation of BRCA results including: cancer diagnosis and health status at time of testing; BRCA result; experience with counseling; and time since counseling and BRCA testing to process and interpret results. Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 3109.