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01.03.2011

An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations

verfasst von: Paboda Ratnayake, Claire E. Wakefield, Bettina Meiser, Graeme Suthers, Melanie A. Price, Jessica Duffy, Kathy Tucker, The Kathleen Cuningham National Consortium for Research into Familial Breast Cancer

Erschienen in: Familial Cancer | Ausgabe 1/2011

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Abstract

The responsibility for informing at-risk relatives of the availability of genetic testing for breast/ovarian cancer gene (BRCA1 or BRCA2) mutations currently falls on the probands. This study explored the support needs of individuals from families with identified BRCA1 or BRCA2 mutations when communicating about genetic risk and genetic testing with at-risk family members. Thirty-nine semi-structured telephone interviews were conducted with individuals from families with identified BRCA mutations. Interview responses were cross-tabulated by sample characteristics using the qualitative research analysis software NVivo8. The development of educational materials, which individuals could use when communicating the risks of carrying a BRCA gene mutation with their relatives, was identified as a specific need. Many participants expressed a preference for a staged approach, where relatives are notified of their increased risk and the availability of genetic testing risk either face-to-face or via a letter, with additional educational sources, including brief written information or access to a website, made available for those wishing to access more in-depth information. This research identified a need for the development of educational/informational resources to support individuals with identified breast/ovarian cancer mutations to communicate with their at-risk relatives about genetic risk and genetic testing availability.

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Titel: An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations
verfasst von: Paboda Ratnayake
Claire E. Wakefield
Bettina Meiser
Graeme Suthers
Melanie A. Price
Jessica Duffy
Kathy Tucker
The Kathleen Cuningham National Consortium for Research into Familial Breast Cancer
Publikationsdatum: 01.03.2011
Verlag: Springer Netherlands
Erschienen in: Familial Cancer / Ausgabe 1/2011
Print ISSN: 1389-9600
Elektronische ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-010-9383-0

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An exploration of the communication preferences regarding genetic testing in individuals from families with identified breast/ovarian cancer mutations

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