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.
family communication
genetic affinity
genetic counselling
genetic information
informing at-risk relatives
knowledge of genetic risk factors
sensitivity analysis
Journal
Cancers
ISSN: 2072-6694
Titre abrégé: Cancers (Basel)
Pays: Switzerland
ID NLM: 101526829
Informations de publication
Date de publication:
13 Dec 2021
13 Dec 2021
Historique:
received:
06
11
2021
revised:
05
12
2021
accepted:
07
12
2021
entrez:
24
12
2021
pubmed:
25
12
2021
medline:
25
12
2021
Statut:
epublish
Résumé
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.
Identifiants
pubmed: 34944873
pii: cancers13246254
doi: 10.3390/cancers13246254
pmc: PMC8699808
pii:
doi:
Types de publication
Journal Article
Langues
eng
Subventions
Organisme : Oncology Nursing Foundation
ID : 2007 Major Breast Cancer Research Award
Organisme : CDC HHS
ID : 5U48DP001901-03
Pays : United States
Organisme : Robert Wood Johnson Foundation, 2010 Nurse Faculty Scholars Award
ID : 68039
Organisme : Swiss Cancer League
ID : KLS-4294-08-2017
Organisme : Swiss Cancer Research Foundation
ID : KFS-5293-02-2021
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