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Communicating genetics research results to families: problems arising when the patient participant is deceased (In special issue: Genetic Testing and Psychosocial Research)

Communicating genetics research results to families: problems arising when the patient participant is deceased (In special issue: Genetic Testing and Psychosocial Research)
Communicating genetics research results to families: problems arising when the patient participant is deceased (In special issue: Genetic Testing and Psychosocial Research)
Objectives: This study explores communication within families of clinically significant genetics research results, after the death of the patient participant. BRCA2 mutations were found in several men after their death from prostate cancer. Spouses were given the results in a genetic counselling session and asked to inform relatives.
Methods: Cross-sectional, qualitative exploratory study. Interviews with 13 relatives, including informers and recipients of the information, were analysed using interpretative phenomenological analysis.
Results: Dissemination was hampered when communication channels between relatives were limited, because of family rifts or socially distant or problematic relationships. When informing other branches of the family, relatives approached individuals in the generation of the deceased man, regardless of their risk status, who were then responsible for informing younger relatives. Most people informed by a relative did not seek genetic counselling. The informing relative may not have sufficient authority for the information either to be taken seriously or to challenge individual constructions about the aetiology of cancer. This impeded information transmission to further at-risk relatives. Most participants knew of relatives who had not been told about their cancer risk.
Conclusions: The implications of this limited efficiency of information transfer among relatives are discussed in the context of a potential role for genetics services in contacting at-risk relatives directly.
family communication, cancer genetics, deceased relative, qualitative, oncology
804-811
Ormondroyd, E.
2617b57e-d9e8-48e8-b3ce-5c0ac4720aa9
Moynihan, C.
be73d33e-3235-4079-b01e-472d7a44740a
Ardern-Jones, A.
615ce40c-596a-4b29-9578-13bf644aa3e0
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Davolls, S.
e796c4cf-9985-4866-b0ae-44bff79c61fd
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa
Ormondroyd, E.
2617b57e-d9e8-48e8-b3ce-5c0ac4720aa9
Moynihan, C.
be73d33e-3235-4079-b01e-472d7a44740a
Ardern-Jones, A.
615ce40c-596a-4b29-9578-13bf644aa3e0
Eeles, R.
c7ae2359-6f49-4f42-88f8-a241570f9d4f
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Davolls, S.
e796c4cf-9985-4866-b0ae-44bff79c61fd
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa

Ormondroyd, E., Moynihan, C., Ardern-Jones, A., Eeles, R., Foster, C., Davolls, S. and Watson, M. (2008) Communicating genetics research results to families: problems arising when the patient participant is deceased (In special issue: Genetic Testing and Psychosocial Research). Psycho-Oncology, 17 (8), 804-811. (doi:10.1002/pon.1356). (PMID:18688787)

Record type: Article

Abstract

Objectives: This study explores communication within families of clinically significant genetics research results, after the death of the patient participant. BRCA2 mutations were found in several men after their death from prostate cancer. Spouses were given the results in a genetic counselling session and asked to inform relatives.
Methods: Cross-sectional, qualitative exploratory study. Interviews with 13 relatives, including informers and recipients of the information, were analysed using interpretative phenomenological analysis.
Results: Dissemination was hampered when communication channels between relatives were limited, because of family rifts or socially distant or problematic relationships. When informing other branches of the family, relatives approached individuals in the generation of the deceased man, regardless of their risk status, who were then responsible for informing younger relatives. Most people informed by a relative did not seek genetic counselling. The informing relative may not have sufficient authority for the information either to be taken seriously or to challenge individual constructions about the aetiology of cancer. This impeded information transmission to further at-risk relatives. Most participants knew of relatives who had not been told about their cancer risk.
Conclusions: The implications of this limited efficiency of information transfer among relatives are discussed in the context of a potential role for genetics services in contacting at-risk relatives directly.

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Published date: August 2008
Keywords: family communication, cancer genetics, deceased relative, qualitative, oncology
Organisations: Faculty of Health Sciences

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Local EPrints ID: 63981
URI: https://eprints.soton.ac.uk/id/eprint/63981
PURE UUID: 7821b384-f0b9-473f-ab87-79537a9e3bfc
ORCID for C. Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 24 Nov 2008
Last modified: 12 Nov 2019 01:47

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Contributors

Author: E. Ormondroyd
Author: C. Moynihan
Author: A. Ardern-Jones
Author: R. Eeles
Author: C. Foster ORCID iD
Author: S. Davolls
Author: M. Watson

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