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Randomized Controlled Trial
. 2016 Oct;15(4):697-706.
doi: 10.1007/s10689-016-9889-1.

Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study

Mary B Daly  1 , Susan Montgomery  2 , Ruth Bingler  3 , Karen Ruth  4
Affiliations
Randomized Controlled Trial

Communicating genetic test results within the family: Is it lost in translation? A survey of relatives in the randomized six-step study

Mary B Daly et al. Fam Cancer. 2016 Oct.

Abstract

Genetic testing for cancer susceptibility genes is increasingly being integrated into medical care. Test results help inform risks of the individual being tested as well as family members who could benefit from knowing the results. The responsibility for informing relatives of genetic test results falls on the proband, the first family member being tested. However, there are several challenges associated with sharing genetic test results within families including incomplete understanding of test results, emotional distance among family members, and poor communication skills. In this paper we describe the communication process between probands randomized to receive BRCA1/2 genetic test results in an enhanced versus a standard of care counseling session, and their first degree relatives with whom they shared results. We contacted 561 first degree relatives of probands who had undergone BRCA1/2 genetic testing to measure their level of understanding of the test results, their difficulty and distress upon hearing the results, the impact of the test results on their risk perception, and their intention to pursue genetic counseling/testing. 82.1 % of relatives correctly reported the test results of their proband. Distress upon hearing the test result was highest for those relatives whose proband received informative test results. Relatives reported a decrease in cancer risk perception after hearing the test results, regardless of the type of result. Intention to pursue counseling/testing was low, even among those relatives whose proband received informative test results. Male relatives were less likely to be informed of test results and more likely to forget hearing them. These results suggest ways to improve the communication process within families.

Keywords: BRCA1/2; Cancer risk; Family communication; Genetic testing.

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Conflict of interest statement

The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Schema showing identification of relatives included in these analyses
Fig. 2
Fig. 2
Relatives perceived risk of cancer being “greater than average”, before and after proband shared GTR (*p ≤ 0.001)
See this image and copyright information in PMC

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