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Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems

Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems
Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems
This qualitative interview study explored the way in which information about predictive BRCA1/2 testing and its implications for children is disseminated within the families of at-risk men who undergo genetic testing. Twenty-nine in-depth interviews were carried out with family members [male patients (n=17), their partners (n=8) and adult children (n=4)]. These explored the following themes: experiences of cancer and genetic testing, decision-making about testing and the communication of test results and genetic information within the immediate family. The interviews revealed that both male patients and their partners perceive themselves, rather than health professionals, as responsible for disclosing information about genetic testing and genetic risks to their children. Parents described three different communication strategies for the disclosure of genetic information to their children: complete openness, limited disclosure and total secrecy. The adoption of a particular communication strategy was justified in terms of children’s rights to information vs their parental duties to protect their children from anxiety-provoking information. Some of the problems arising from the adoption of different disclosure patterns are identified and the implications for clinical practice are discussed.
BRCA1/2 predictive testing, cancer, family communication, men, risk information
0009-9163
492-502
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Ardern-Jones, A.
615ce40c-596a-4b29-9578-13bf644aa3e0
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Foster, C.L.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Lucassen, A.
ff9a15b3-3c3a-4538-bc8e-b0099b8b382d
Moynihan, C.
be73d33e-3235-4079-b01e-472d7a44740a
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa
Hallowell, N.
46e75a41-5a17-4e2c-8bc7-d321902d655d
Ardern-Jones, A.
615ce40c-596a-4b29-9578-13bf644aa3e0
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Foster, C.L.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Lucassen, A.
ff9a15b3-3c3a-4538-bc8e-b0099b8b382d
Moynihan, C.
be73d33e-3235-4079-b01e-472d7a44740a
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa

Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C.L., Lucassen, A., Moynihan, C. and Watson, M. (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67 (6), 492-502. (doi:10.1111/j.1399-0004.2005.00443.x).

Record type: Article

Abstract

This qualitative interview study explored the way in which information about predictive BRCA1/2 testing and its implications for children is disseminated within the families of at-risk men who undergo genetic testing. Twenty-nine in-depth interviews were carried out with family members [male patients (n=17), their partners (n=8) and adult children (n=4)]. These explored the following themes: experiences of cancer and genetic testing, decision-making about testing and the communication of test results and genetic information within the immediate family. The interviews revealed that both male patients and their partners perceive themselves, rather than health professionals, as responsible for disclosing information about genetic testing and genetic risks to their children. Parents described three different communication strategies for the disclosure of genetic information to their children: complete openness, limited disclosure and total secrecy. The adoption of a particular communication strategy was justified in terms of children’s rights to information vs their parental duties to protect their children from anxiety-provoking information. Some of the problems arising from the adoption of different disclosure patterns are identified and the implications for clinical practice are discussed.

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More information

Published date: 2005
Keywords: BRCA1/2 predictive testing, cancer, family communication, men, risk information
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 63990
URI: http://eprints.soton.ac.uk/id/eprint/63990
ISSN: 0009-9163
PURE UUID: 45b73d0d-2143-4f57-a884-798e8edf731e
ORCID for C.L. Foster: ORCID iD orcid.org/0000-0002-4703-8378

Catalogue record

Date deposited: 21 Nov 2008
Last modified: 16 Mar 2024 03:41

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Contributors

Author: N. Hallowell
Author: A. Ardern-Jones
Author: R. Eeles
Author: C.L. Foster ORCID iD
Author: A. Lucassen
Author: C. Moynihan
Author: M. Watson

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