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.

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 (2021). 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. Cancers, 13(24) MDPI AG 10.3390/cancers13246254

Preview

Text cancers-13-06254-v4.pdf - Published Version Available under License Creative Commons: Attribution (CC-BY). Download (280kB) | Preview

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.

Interest & Impact

Downloads

34 since deposited on 24 Jan 2022
25 in the past 12 months

Citations

5 Citations in Web of Science ®
6 Citations in Scopus

Search

in Google Scholar™

Services

Actions (login required)

Edit item

Actions (login required)

Edit item