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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)
 
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
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
Digital Object Identifier DOI 10.3390/cancers13246254
PubMed ID http://www.ncbi.nlm.nih.gov/pubmed/34944873
   

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