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- W2590132543 abstract "1016 Background: Genetic testing of minors for adult-onset diseases has generally been discouraged. One study reported 53% of parents with a BRCA1/2 mutation discussed test results with their minor children. Thus, despite a restriction on genetic testing in minors, limited evidence suggests many teenagers and children are informed of their genetic risk. Methods: We sought to evaluate the rate of parental disclosure to adult and minor children, under the age of 25, within our Cancer Risk Clinic. BRCA1/2 mutation carriers were interviewed by telephone and asked to recall their experience with, motivations for, and opinions regarding, communication of genetic test results to their children under the age of 25 years old. Open-ended survey responses were coded for descriptive analysis. Results: To date, 42 BRCA1/2 carriers have been interviewed, with 88% of participants women; 93% Caucasian. Median age of probands: 45 years old. Subjects had a total of 91 children; 60% female. The median age of the children at time of testing was 12 years old (30% were between 18 and 25 years old; 31% were 10–17 years old; 39% < 10 years old). 52% (22/42) of parents discussed the hereditary risk of cancer with at least one child, and 48% (20/42) specifically disclosed genetic test Results: In those with children less than 18, 30% (10/33) had discussed test results with their children. Of those who did not disclose, 41% (12/29) reported plans to disclose before, or at the age of 18. Overall, 70% of parents either have disclosed, or plan to disclose prior to, or at, the age of 18. When asked if they felt genetic testing of minors should be permitted, 67% (28/42) responded no, 29% (12/42) were in favor and 5% (2/42) were undecided. Conclusions: A significant number of BRCA mutation carriers have communicated, or plan to communicate, their genetic test results to their children prior to the recommended age of genetic testing. Despite this, most mutation carriers do not agree with direct testing of children. Further research is needed to describe the communication process among BRCA mutation carriers and their children, and the impact of these communications on children and family dynamics. No significant financial relationships to disclose." @default.
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- W2590132543 date "2005-06-01" @default.
- W2590132543 modified "2023-10-18" @default.
- W2590132543 title "Parental disclosure of genetic test results to young adults, adolescents and children" @default.
- W2590132543 doi "https://doi.org/10.1200/jco.2005.23.16_suppl.1016" @default.
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