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Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years.
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) |
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ID |
4635879 |
Author(s) |
Pedrazzani, Carla; Ming, Chang; Bürki, Nicole; Caiata-Zufferey, Maria; Chappuis, Pierre O; Duquette, Debra; Heinimann, Karl; Heinzelmann-Schwarz, Viola; Graffeo-Galbiati, Rossella; Merajver, Sofia D; Milliron, Kara J; Monnerat, Christian; Pagani, Olivia; Rabaglio, Manuela; Katapodi, Maria C |
Author(s) at UniBasel |
Katapodi, Maria
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Year |
2021 |
Title |
Genetic Literacy and Communication of Genetic Information in Families Concerned with Hereditary Breast and Ovarian Cancer: A Cross-Study Comparison in Two Countries and within a Timeframe of More Than 10 Years. |
Journal |
Cancers |
Volume |
13 |
Number |
24 |
Pages / Article-Number |
6254 |
Keywords |
family communication; genetic affinity; genetic counselling; genetic information; informing at-risk relatives; knowledge of genetic risk factors; sensitivity analysis |
Abstract |
Examining genetic literacy in families concerned with hereditary breast and ovarian cancer (HBOC) helps understand how genetic information is passed on from individuals who had genetic counseling to their at-risk relatives. This cross-study comparison explored genetic literacy both at the individual and the family level using data collected from three sequential studies conducted in the U.S. and Switzerland over ≥10 years. Participants were primarily females, at-risk or confirmed carriers of HBOC-associated pathogenic variants, who had genetic counselling, and ≥1 of their relatives who did not. Fifteen items assessed genetic literacy. Among 1933 individuals from 518 families, 38.5% had genetic counselling and 61.5% did not. Although genetic literacy was higher among participants who had counselling, some risk factors were poorly understood. At the individual level, genetic literacy was associated with having counselling, ≤5 years ago, higher education, and family history of cancer. At the family level, genetic literacy was associated with having counselling, higher education, and a cancer diagnosis. The findings suggest that specific genetic information should be emphasized during consultations, and that at-risk relatives feel less informed about inherited cancer risk, even if information is shared within families. There is a need to increase access to genetic information among at-risk individuals. |
ISSN/ISBN |
2072-6694 |
Full Text on edoc |
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Digital Object Identifier DOI |
10.3390/cancers13246254 |
PubMed ID |
http://www.ncbi.nlm.nih.gov/pubmed/34944873 |
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12/05/2024
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