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Attitudes toward Colon Cancer Gene Testing: Survey of Relatives of Colon Cancer Patients¹

Department of Epidemiology, School of Public Health [G. M. P., E. L., C-Y. W., P. A. B.], Oncology Center, School of Medicine [G. M. P., A-M. C., S. V. B., J. B., F. M. G.], Department of Psychiatry and Behavioral Medicine, School of Medicine [A-M. C.], and Department of Medicine, School of Medicine [F. M. G.], Johns Hopkins University, Baltimore, Maryland 21205

Objectives. Various studies have identified psychosocial factors that may influence attitudes toward colon cancer gene testing. Whereas family history of colon cancer has been associated with interest in gene testing, this has not been examined extensively. We hypothesized that the strength of family history of colon cancer is associated with risk perception and willingness to undergo gene testing.

Materials and Methods. We evaluated attitudes toward colon cancer gene testing among persons who had at least one first-degree relative with colon cancer. A total of 2680 at-risk relatives in 863 kindreds were identified and mailed an extensive survey regarding sociodemographic variables, family history, health behaviors and knowledge, and willingness to take a colon cancer gene test. A total of 56.6% of persons completed and returned surveys. We conducted a brief telephone survey of a random sample of 200 persons who did not respond to the mail survey.

Results. The combined study sample of 1373 people was 42% male, had a mean age of 55 ± 15 years, was 96% white, and had moderate-to-high SES. A total of 77.4% were very likely to take the gene test, and 92.4% were somewhat or very likely to take the gene test. A total of 78% of the sample perceived a higher colon cancer risk, although patterns of risk perception and worry differed significantly between mail survey and telephone survey respondents. More of the telephone survey respondents were also somewhat unlikely or very unlikely to take the gene test compared to the mail survey respondents (13.7% versus 6.9%). In the combined sample, concern about developing colon cancer and risk perception increased with number of relatives with colon cancer (P < 0.0001). Eight percent expressed no concern about developing colon cancer; 4.8% felt their chance of developing colon cancer was lower than others of the same age, sex, and race; and 3.3% felt that they were very unlikely to develop colon cancer in their lifetime. However, there was strong interest in gene testing regardless of the number of affected relatives, and persons with more affected relatives were generally willing to pay more for the gene test (up to $1000).

Conclusions. The strength of family history of colon cancer is associated with risk perception but not with willingness to undergo gene testing.

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