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Article

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

1
Department of Clinical Research, Faculty of Medicine, University of Basel, 4055 Basel, Switzerland
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Women’s Clinic, University Hospital Basel, 4031 Basel, Switzerland
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Department of Business Economics, Health and Social Care, University of Applied Science and Arts of Southern Switzerland, 6928 Manno, Switzerland
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Oncogenetics Unit, Service of Oncology, University Hospital of Geneva, 1205 Geneva, Switzerland
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Feinberg School of Medicine, Northwestern University, Chicago, IL 60208, USA
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Medical Genetics, University Hospital Basel, 4031 Basel, Switzerland
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Oncology Institute of Southern Switzerland, 6900 Lugano, Switzerland
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University of Michigan School of Public Health, Ann Arbor, MI 48109, USA
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Roger Comprehensive Cancer Center, University of Michigan, Ann Arbor, MI 48109, USA
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Jura Hospital, 2800 Delémont, Switzerland
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Inselspital University Hospital, 3010 Bern, Switzerland
*
Author to whom correspondence should be addressed.
Academic Editor: Carlos S. Moreno
Cancers 2021, 13(24), 6254; https://doi.org/10.3390/cancers13246254
Received: 6 November 2021 / Revised: 5 December 2021 / Accepted: 7 December 2021 / Published: 13 December 2021
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. View Full-Text
Keywords: genetic counselling; family communication; genetic information; informing at-risk relatives; knowledge of genetic risk factors; genetic affinity; sensitivity analysis genetic counselling; family communication; genetic information; informing at-risk relatives; knowledge of genetic risk factors; genetic affinity; sensitivity analysis
MDPI and ACS Style

Pedrazzani, C.; Ming, C.; Bürki, N.; Caiata-Zufferey, M.; Chappuis, P.O.; Duquette, D.; Heinimann, K.; Heinzelmann-Schwarz, V.; Graffeo-Galbiati, R.; Merajver, S.D.; Milliron, K.J.; Monnerat, C.; Pagani, O.; Rabaglio, M.; Katapodi, M.C., on behalf of the CASCADE Consortium. 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 2021, 13, 6254. https://doi.org/10.3390/cancers13246254

AMA Style

Pedrazzani C, Ming C, Bürki N, Caiata-Zufferey M, Chappuis PO, Duquette D, Heinimann K, Heinzelmann-Schwarz V, Graffeo-Galbiati R, Merajver SD, Milliron KJ, Monnerat C, Pagani O, Rabaglio M, Katapodi MC on behalf of the CASCADE Consortium. 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. 2021; 13(24):6254. https://doi.org/10.3390/cancers13246254

Chicago/Turabian Style

Pedrazzani, Carla, Chang Ming, Nicole Bürki, Maria Caiata-Zufferey, Pierre O. Chappuis, Debra Duquette, Karl Heinimann, Viola Heinzelmann-Schwarz, Rossella Graffeo-Galbiati, Sofia D. Merajver, Kara J. Milliron, Christian Monnerat, Olivia Pagani, Manuela Rabaglio, and Maria C. Katapodi on behalf of the CASCADE Consortium. 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, no. 24: 6254. https://doi.org/10.3390/cancers13246254

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