Colorectal Cancer Cases and Relatives of Cases Indicate Similar Willingness to Receive and Disclose Genetic Information

Abstract

Context Recent developments in genetic testing allow us to detect individuals with inherited susceptibility to some cancers. Genetic testing to identify carriers of cancer-related mutations may help lower risk by encouraging preventive behaviors and surveillance. This study assessed willingness of colon cancer cases and relatives to receive genetic information that may indicate an increased risk for cancer, to whom they would disclose genetic information, and whether receiving genetic test results may influence future prevention behaviors among individuals enrolled in the Seattle Colorectal Cancer Family Registry. Methods Incident invasive colorectal cancer cases were identified from the Puget Sound Surveillance Epidemiology and End Results (SEER) registry. In 2007, a sequential sample of cases and relatives (n = 147) were asked to respond to a questionnaire addressing study aims. The questionnaire was administered during a baseline or 5-year follow-up interview. Results Patterns of response to each statement were similar between colorectal cancer cases and relatives. Both colorectal cases (95%) and relatives (95%) reported willingness to receive genetic information. Nearly all participants would tell their doctor the results of a genetic test (99% of cases; 98% of relatives), and all married participants would tell their spouses. Cases (96%) anticipated being slightly more likely than relatives (90%) to change their cancer screening behavior, but this difference was not statistically significant (p = 0.33). Conclusions A high percentage of both colorectal cancer cases and relatives sampled from the Seattle Colorectal Cancer Family Registry are interested in identifying their genetic status, discussing their genetic status with their family and doctor, and adopting behavioral changes that may reduce cancer risk.

Survey report of gamete donors' and recipients' preferences regarding disclosure of third party reproduction outcomes and genetic risk information

“…Similarly, other studies revealed 90% of patients with hereditary neopolyposis colorectal cancer who had given blood samples wanted to know the results of the genetic testing, 20 and a survey of donor preferences in an ongoing Japanese‐population‐based genetic epidemiologic study ( n = 1857) revealed that 91% of individuals were amenable to future contact and disclosure of information. Data from the Puget Sound Surveillance Epidemiology and End Results (SEER) registry also suggests that a high percentage of both colorectal cancer patients and their relatives are interested in identifying their genetic status, discussing their genetic status with their family and doctor, and adopting behavioral changes that may reduce cancer risk 21 . However, these findings may not necessarily be extrapolated to the third party reproductive context, where the donor relationship is premised on anonymity and often times oocyte donors may not tell their family members that they are donating their gametes and any willingness to assist the donor's future family planning, relatives or family members is largely unknown.…”

“…Data from the Puget Sound Surveillance Epidemiology and End Results (SEER) registry also suggests that a high percentage of both colorectal cancer patients and their relatives are interested in identifying their genetic status, discussing their genetic status with their family and doctor, and adopting behavioral changes that may reduce cancer risk. 21 However, these findings may not necessarily be extrapolated to the third party reproductive context, where the donor relationship is premised on anonymity and often times oocyte donors may not tell their family members that they are donating their gametes and any willingness to assist the donor's future family planning, relatives or family members is largely unknown.…”

Preferences regarding Genetic Research Results: Comparing Veterans and Nonveterans Responses

“…Some studies of public opinion have shown wide support for the return of research results from biobanks [24,27]. Other studies have shown participants’ desire to receive results about genetic risk assessment for preventable or potentially manageable diseases, as in the case of colorectal cancer [28]. In addition, participants have expressed a desire to know their individual results of a genetic test that may reveal their likelihood of developing an untreatable illness, such as Alzheimer’s [29].…”

Impact of genetic risk assessment on nutrition-related lifestyle behaviours

“…In the case of colorectal cancer, the study of Ceballos et al(29) evaluated the motivation of participants to increase screening uptake following genetic risk assessment. Other studies evaluating changes in lifestyle behaviours following risk assessment for cancer evaluated changes in smoking behaviours.…”