Attitudes and distress levels in women at risk to carry a BRCA1/BRCA2 gene mutation who decline genetic testing

American Journal of Medical Genetics. Part a
Litanja N LodderM F Niermeijer

Abstract

Genetic testing enables women at risk for hereditary breast and/or ovarian cancer to find out whether they have inherited the gene mutation, and if so, to opt for undergoing frequent surveillance and/or prophylactic surgery. However, the option to know about one's genetic status is not always seen as a benefit by women at risk. Motives for declining genetic testing were explored in 13 women at 25% or 50% risk to be a BRCA1/BRCA2 mutation carrier, who participated in a surveillance program for breast/ovarian cancer (the non-tested group). We hypothesized that high anxiety might be an important motive to decline testing. In addition, we investigated whether the non-tested group differed from a reference group of women who did undergo the test (tested group; n = 85) with regard to biographical factors, experience with cancer in relatives, and personality traits. Most non-tested women (10/13) were satisfied with participating in the surveillance program. Four reported to feel emotionally unprepared to cope with the consequences of testing. Compared with the tested group, the non-tested women had similar mean distress levels (which were not high), but a higher education level, they were more often childless, showed more reluctance t...Continue Reading

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Citations

Mar 31, 2007·Genetic Testing·Shannon KieranKyung Hee Lim
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May 29, 2018·Breast Cancer Research and Treatment·Alexander LiedeD Gareth Evans

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