Burke, W. & Press, N. Genetics as a tool to improve cancer outcomes: ethics and policy. Nature Rev. Cancer 6, 476-482

Department of Medical History and Ethics, University of Washington, BOX 357120, 1959 North East Pacific, Room A204, Seattle, Washington 98195-7120, USA.
Nature reviews. Cancer (Impact Factor: 37.91). 07/2006; 6(6):476-82. DOI: 10.1038/nrc1890
Source: PubMed

ABSTRACT Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategies that are responsive to rapidly changing knowledge. When the benefits of testing are well established, efforts must also be made to ensure access to genetic services for all who can benefit.

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    • "These findings highlight the importance of evaluating participant willingness a priori to receive such information and discussing implications of results. Several authors (Bookman et al., 2006; Burke and Press, 2006) have drafted guidelines regarding the selection of individuals for genetic testing and a program of individualized assessments to discuss testing and dissemination. Our study, which assessed the opinions of a subset of individuals from the Seattle C-CFR, was conducted as an initial step in this process of disclosure for participants enrolled in the cancer registry. "
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    ABSTRACT: 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. 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. 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). 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.
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