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• W2950343846 abstract "Background Patients with cancer are increasingly offered genomic sequencing, including germline testing for cancer predisposition or other disorders. Such testing is unfamiliar to patients and families, and clear communication is needed to introduce genomic concepts and convey risk and benefit information. Methods Parents of children with cancer were offered the opportunity to have their children’s tumor and germline examined with clinical genomic sequencing. Families were introduced to the study with a 2‐visit informed consent model. Baseline genetic knowledge and self‐reported literacy/numeracy were collected before a study introduction visit, during which basic concepts related to genomic sequencing were discussed. Information was reinforced during a second visit, during which informed consent was obtained and a posttest was administered. Results As reflected by the percentage of correct answers on the pretest and posttest assessments, this model increased genetic knowledge by 11.1% (from 77.8% to 88.9%; P < .0001) in 121 parents participating in both the study introduction and consent visits. The percentage of parents correctly identifying the meaning of somatic and germline mutations increased significantly (from 18% to 59% [somatic] and from 31% to 64% [germline]; P < .0001). Nevertheless, these concepts remained unfamiliar to one‐third of the parents. No relation was identified between the change in the overall percentage of correct answers and self‐reported literacy, numeracy, or demographics. Conclusions The use of a 2‐visit communication model improved knowledge of concepts relevant to genomic sequencing, particularly differences between somatic and germline testing; however, these areas remained confusing to many participants, and reinforcement may be necessary to achieve complete understanding." @default.
• W2950343846 created "2019-06-27" @default.
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• W2950343846 date "2019-03-22" @default.
• W2950343846 modified "2023-10-09" @default.
• W2950343846 title "Speaking genomics to parents offered germline testing for cancer predisposition: Use of a 2‐visit consent model" @default.
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• W2950343846 doi "https://doi.org/10.1002/cncr.32071" @default.
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