Informed consent and BRCA1 testing

Geller, Gail; Bernhardt, Barbara A.; Helzlsouer, Kathy J.; Holtzman, Neil A.; Stefanek, Michael; Wilcox, Patti M.

doi:10.1038/ng1295-364

Cited by 40 publications

(16 citation statements)

References 4 publications

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“…Obtaining such information may result in family tensions, such as ostracizing members not carrying a mutated gene, or can impact decisions on whether or not to have children. Receiving positive test results for diseases for which there are no known treatments may result in negative psychosocial reactions-such as extreme dismay or suicide (Geller, Bernhardt, Helzlsouer, Holtzman, Stefanek, & Wilcox, 1995). Even negative results can have undesirable effects; Lerman et al (1999) found that about half of their interviewees indicated that negative test results would lead to unhealthy behavior due to either false reassurance or misunderstanding of risks.…”

Section: Discussionmentioning

confidence: 98%

From two‐step flow to the Internet: The changing array of sources for genetics information seeking

Case

Johnson

Andrews

et al. 2004

J. Am. Soc. Inf. Sci.

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The diffusion of the Internet has radically expanded the readily available sources for information of all types. Information that was once obtained second-hand from friends and acquaintances-the traditional "two-step flow"-is now found easily through the Internet. The authors make use of survey data to explore this thesis in regards to information sources about genetic testing and the influence of the Internet on the information seeking behaviors of the public. A telephone survey of a random sample of 882 adults asked them about their knowledge of, concerns about, and interest in genetic testing. Respondents were most likely to first turn to the Internet for information about cancer genetics, second to public libraries, and third to medical doctors. Overall, doctors were the most likely source to be consulted when second and third choices are considered. Age, income, and self-reported understanding of genetics are shown to be predictors of whether someone goes to medical professionals for advice, rather than to the Internet or public library. The results raise questions about the apparent tendency of the public to regard the Internet as the best source of information on complex topics like genetics, for which it may be ill-suited.

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Section: Discussionmentioning

confidence: 98%

From two‐step flow to the Internet: The changing array of sources for genetics information seeking

Case

Johnson

Andrews

et al. 2004

J. Am. Soc. Inf. Sci.

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“…Geller et al [1995] conducted focus groups among women to discuss BRCA1 testing. In non-Jewish individuals, interest in testing waned following discussions of the limitations, risks, and benefits.…”

Section: Discussionmentioning

confidence: 99%

Response to genetic counseling and testing for the APC I1307K mutation

et al. 2000

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The APC I1307K gene mutation is associated with increased colorectal cancer (CRC) risk in Ashkenazi Jews. Factors predicting acceptance of this and other hereditary colon cancer mutation tests in a clinical setting are unknown. We analyzed sex, age, family history, personal history, and gene test results of patients at increased risk for cancer who sought cancer risk counseling at the Johns Hopkins (JH) CRC Risk Assessment Clinic (n = 91), and those submitting samples to the JH Pathology Molecular Diagnostic Laboratory (n = 256) for APC I1307K testing. Of patients seen at the JH Clinic, 77/91 (84.6%) elected APC I1307K testing after pretest counseling (acceptors). There were no statistically significant differences in demographic characteristics between acceptors and decliners. In comparison, only 8 of 57 (14.0%) patients offered HNPCC testing proceeded with testing (P < 0.001). Of 256 individuals tested at the JH laboratory, most were male (61.3%) and most had a personal or family history of colorectal cancer or polyps. Test positivity correlated with increasing risk of colorectal cancer. Acceptance of testing for the APC I1307K mutation is high, with more men than women pursuing counseling and testing. The reported association between the APC I1307K mutation and colon cancer risk was supported by a correlation in these data between personal or family history of CRC or polyps and a gene mutation.

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“…However, this is not consistent with previous research, which suggests that there is a high level of interest among Ashkenazi Jewish women. 13 The GTE intervention had a modest but significant impact on attitudes toward BRCA1/BRCA2 testing. Prior to the intervention, individuals in both groups believed that the pros of testing were considerably more important than the cons of testing.…”

Section: Discussionmentioning

confidence: 99%

“…12 This high level of interest in BRCA1/BRCA2 testing may be due in part to exaggerated perceptions of susceptibility and a lack of understanding of the benefits and risks/limitations of BRCA1/BRCA2 testing. [13][14][15][16] Thus, for individuals with little or no family history of breast carcinoma, education may lead to a decline in interest by fostering a more accurate understanding of the benefits and risks/limitations of testing. In fact, recent research has shown that in-person education can reduce interest in testing among women who are at low to moderate risk for carrying a BRCA1/BRCA2 mutation.…”

mentioning

confidence: 99%