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    Genetics of Colorectal Cancer (PDQ®): Genetics - Health Professional Information [NCI] - Psychosocial Issues in Hereditary Colon Cancer Syndromes

    Table 19. Studies Measuring Quality-of-Life Variables in Familial Adenomatous Polyposis (FAP) continued...

    For most participants in these studies, the news that the pattern of cancers in their families was attributable to a LS-predisposing mutation did not come as a surprise,[67,68] as individuals had suspected a hereditary cause for the familial cancers or had prior family discussions about cancer. Identification of a LS-predisposing mutation in the family was considered a private matter but not necessarily a secret,[67] and many individuals had discussed the family's mutation status with someone outside of the family. Knowledge about the detection of a LS-predisposing mutation in the family was not viewed as stigmatizing, though individuals expressed concern about the potential impact of this information on insurance discrimination.[67] Also, while there may be a willingness to disclose information about the presence of a mutation in the family, one study suggests a tendency to remain more private about the disclosure of individual results, distinguishing personal results from familial risk information.[72] In a few cases, individuals reported that their relatives expressed anger, shock, or other negative emotional reactions after receiving news about the family's LS risk;[69] however, most indicated little to no difficulty in informing their relatives.[68] It was suggested that families who are more comfortable and open with cancer-related discussions may be more receptive and accepting of news about genetic risk.[69]

    In some cases, probands reported feeling particularly obliged to inform family members about a hereditary cancer risk [69] and were often the strongest advocates for encouraging their family members to undergo genetic counseling and testing for the family mutation.[67] Some gender and family role differences also emerged in regard to the dissemination of hereditary cancer risk information. One study reported that female probands were more comfortable discussing genetic information than were male probands and that male probands showed a greater need for professional support during the family communication process.[68] Another study suggested that mothers may be particularly influential members of the family network in regard to communicating health risk information.[73] Mutation-negative individuals, persons who chose not to be tested, and spouses of at-risk persons reported not feeling as personally involved with the risk communication process compared with probands and other at-risk persons who had undergone genetic testing.[67]

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