Abstract P2-12-05: Exploring the experience of relatives with whom genetic test results are communicated

Abstract

Abstract There is increasing interest in the psychosocial impact of genetic testing, both on the individual who has been tested and on family members who could benefit from knowing the test results. The responsibility for informing relatives of genetic test results falls on the proband, the first family member being tested. While there is limited data about the reaction of relatives with whom genetic test results are shared, there is some evidence that open, positive family relationships increase the likelihood of disclosure of test results while emotional distance, family conflict, and loss of contact decrease the likelihood of disclosure. We explored the communication process between probands undergoing genetic testing for BRCA1/2 and their first degree relatives with whom they shared results. Four hundred twenty two women were randomized to a communication skills-building intervention or a wellness control session. Overall, probands shared their test result with 80% of eligible relatives. As part of this study, relatives were surveyed by phone regarding factors associated with the communication process, and their ability to understand and cope with the information provided to them by the proband. This study focuses on 438 relatives (of 253 probands) who reported that test results were shared. The percent of relatives with whom genetic test results were shared did not differ by study group. However, there were significant differences across gender and generation. Female relatives were more likely to receive genetic test results (p = 0.0001), and adult children were more likely to receive genetic test results than either parents or siblings (p = 0.0006). Both positive and true negative test results were more likely to be communicated to relatives than indeterminate or inconclusive results. Comparing the actual test result of the proband with that reported by the relative, we found that 26% of relatives cited an incorrect test result, and this number did not differ by study group. Positive test results were the most likely to be correctly understood by the relatives (90%), while inconclusive test results were the least likely to be correctly understood (60%) (p = 0.005). When asked about their reaction to receipt of test results, 32% of relatives reported difficulty in understanding the test result, and 27% were upset with the information they received. Of those relatives whose proband received a positive test result, only 52% reported intention to pursue testing for themselves. Similarly, only 36% of relatives whose proband received true negative test results intended to pursue testing, implying the relatives did not fully understand the significance of these informative results for their own risk These findings indicate that sharing of genetic test results by probands to their adult first degree relatives is variable, that the information shared is often not well understood, and that there is significant distress associated with the sharing of test results on the part of the relatives. These findings suggest that relying on the probands to share their test results with their relatives is fraught with limitations which may compromise the value of the information for the relatives. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P2-12-05.