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Talking to relatives about genetic testing for BRCA1/2 and its risk implications: an on-going discussion

Talking to relatives about genetic testing for BRCA1/2 and its risk implications: an on-going discussion
Talking to relatives about genetic testing for BRCA1/2 and its risk implications: an on-going discussion
Background: Access to genetic cancer risk information can be highly dependent on whether familial risks are discussed within the family. Despite its essential role in ensuring family members have access to genetic services, there are a number of gaps in the knowledge available on people’s experiences regarding talking to their relatives about genetic testing for BRCA1/2 and its risk implications. In particular, research to date has focused far more on with whom and why (motivations) family communication regarding genetic testing occurs, rather than when or how it is occurring.

Method: The study is qualitative in nature, employing in-depth interviews and constructing eco-maps as a method of identifying relevant family members and guiding the researcher through the family structure and relationships. These methods were chosen in line with an interpretive description methodology to ensure depth and richness in analysis and reporting of findings.

Results: The Key Findings are as follows:
1. Communication between emotionally close relatives is different to communication with emotionally distant relatives; with emotionally close family and friends it is about sharing and supporting; whereas with emotionally distant family it is about gaining and imparting information.

2. A family’s engagement in communication regarding genetic testing is implicitly linked to their experiences of cancer burden, and how openly this is discussed in the family.

3. There is a lack of understanding of risks to men and their offspring based on perceptions of hereditary breast and ovarian cancer being a female disease.

4. Emotionally distant and male relatives are only contacted selectively. Those undergoing genetic testing for BRCA1/2 are not good at identifying all at-risk family members in order to share the implications of the genetic test with them.

5. As far as the family are concerned, members do not have the right to make an informed decision to decline.

6. Plans for telling people in the future, especially children, is a cause of worry and concern for those undergoing testing and needs further support, especially in the longer term.

Conclusions: Developing interventions to help manage problems associated with family communication regarding genetic testing for cancer risk should be a top research priority, especially as the numbers of people affected by these issues is set to rise as more genes are discovered. The longitudinal view identified gives deep insight into how and when genetic testing for BRCA1/2 are discussed within these families, allowing future interventions to be targeted where they are most helpful.
Chivers Seymour, Kimberley-Clair
d6481469-d33d-4b97-a6d1-56e7db1a4d25
Chivers Seymour, Kimberley-Clair
d6481469-d33d-4b97-a6d1-56e7db1a4d25
Addington-Hall, Julia
87560cc4-7562-4f9b-b908-81f3b603fdd8
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73

Chivers Seymour, Kimberley-Clair (2013) Talking to relatives about genetic testing for BRCA1/2 and its risk implications: an on-going discussion. University of Southampton, Faculty of Health Sciences, Doctoral Thesis, 366pp.

Record type: Thesis (Doctoral)

Abstract

Background: Access to genetic cancer risk information can be highly dependent on whether familial risks are discussed within the family. Despite its essential role in ensuring family members have access to genetic services, there are a number of gaps in the knowledge available on people’s experiences regarding talking to their relatives about genetic testing for BRCA1/2 and its risk implications. In particular, research to date has focused far more on with whom and why (motivations) family communication regarding genetic testing occurs, rather than when or how it is occurring.

Method: The study is qualitative in nature, employing in-depth interviews and constructing eco-maps as a method of identifying relevant family members and guiding the researcher through the family structure and relationships. These methods were chosen in line with an interpretive description methodology to ensure depth and richness in analysis and reporting of findings.

Results: The Key Findings are as follows:
1. Communication between emotionally close relatives is different to communication with emotionally distant relatives; with emotionally close family and friends it is about sharing and supporting; whereas with emotionally distant family it is about gaining and imparting information.

2. A family’s engagement in communication regarding genetic testing is implicitly linked to their experiences of cancer burden, and how openly this is discussed in the family.

3. There is a lack of understanding of risks to men and their offspring based on perceptions of hereditary breast and ovarian cancer being a female disease.

4. Emotionally distant and male relatives are only contacted selectively. Those undergoing genetic testing for BRCA1/2 are not good at identifying all at-risk family members in order to share the implications of the genetic test with them.

5. As far as the family are concerned, members do not have the right to make an informed decision to decline.

6. Plans for telling people in the future, especially children, is a cause of worry and concern for those undergoing testing and needs further support, especially in the longer term.

Conclusions: Developing interventions to help manage problems associated with family communication regarding genetic testing for cancer risk should be a top research priority, especially as the numbers of people affected by these issues is set to rise as more genes are discovered. The longitudinal view identified gives deep insight into how and when genetic testing for BRCA1/2 are discussed within these families, allowing future interventions to be targeted where they are most helpful.

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More information

Published date: June 2013
Organisations: University of Southampton, Faculty of Health Sciences

Identifiers

Local EPrints ID: 354118
URI: https://eprints.soton.ac.uk/id/eprint/354118
PURE UUID: 133a528a-2b14-4b67-b262-d525f5994067
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 08 Jul 2013 11:52
Last modified: 06 Jun 2018 12:43

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