Abstract
Genetic testing for hereditary breast and ovarian cancer reveals significant risk information regarding one's chances of developing cancer that has potential implications for patients and their families. This study reports on the motivations and attitudes of index patients and their relatives towards genetic testing for hereditary breast and ovarian cancer. In total, 10 female index patients and 20 of their relatives were interviewed regarding their experiences of communicating genetic information within their families, and their motivations and attitudes towards genetic testing. The analysis found two types of ‘family groups’: groups strongly committed to genetic testing and groups uncertain about testing. Within committed family groups, index patients and their relatives felt obliged to be tested for others, leading some relatives to be tested without having fully thought through their decision or the implications of knowing their mutation status. These family groups also described considerations in relation to the value of testing for themselves. In family groups uncertain about testing, relatives had not attended for predictive testing, had postponed decision making until some point in the future or had expressed ambivalence about the value of testing for themselves. Results suggest the value of explicitly acknowledging motivations for genetic testing within the context of family obligations, relationships and communication, and the possible value of involving family members in genetic counselling and decision making from a family's first contact with genetic services.
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Acknowledgements
This study was funded by the UK Department of Health Grant (HSR06). We thank the genetics services for help in recruitment and the patients and relatives who participated.
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… Indicates editorial elision in which non-relevant material has been omitted.
[text] Indicates explanatory text added by authors.
F stands for family in transcript identifier; F1 is family 1.
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Dancyger, C., Smith, J., Jacobs, C. et al. Comparing family members’ motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: a qualitative analysis. Eur J Hum Genet 18, 1289–1295 (2010). https://doi.org/10.1038/ejhg.2010.114
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DOI: https://doi.org/10.1038/ejhg.2010.114
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