1. 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.
- Author
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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, and Katapodi, Maria C.
- Subjects
BREAST tumor risk factors ,OVARIAN tumors ,GENETICS ,GENETIC disorders ,FAMILIES ,HEALTH literacy ,COMPARATIVE studies ,HEALTH ,INFORMATION resources ,COMMUNICATION ,ACCESS to information ,GENETIC counseling ,DISEASE risk factors - Abstract
Simple Summary: This cross-study comparison uses data collected over 10 years from families living in the US and in Switzerland in order to compare genetic literacy between individuals who had genetic counselling for hereditary breast/ovarian cancer (HBOC) and one or more of their relatives who did not, and examines factors influencing genetic literacy both at the individual and at the family level. The study identifies genetic risk factors and signs of HBOC that remain unclear, even to individuals who had genetic consultation, and highlights the gaps in the dissemination of genetic information. Sensitivity analysis examines the dissemination of genetic information from the individual who had counselling to relatives within the same family that did not. 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. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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