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Familial Cancer
Published in: Familial Cancer 4/2018

01-10-2018 | Original Article

Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline

Published in: Familial Cancer | Issue 4/2018

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Abstract

Unaffected relatives of individuals with Lynch syndrome can be offered predictive genetic testing to guide surveillance recommendations. The decision-making process of those who decline testing, particularly those who do not attend a clinical genetics service, is poorly understood. We have addressed this gap by interviewing 33 individuals from Lynch syndrome mutation-carrying families, unaffected by cancer, who declined predictive genetic testing. Here, we analyse the data provided by 20 participants who unequivocally declined testing. Those who indicated they did not have enough information to make a decision or intended to undergo testing in the future were excluded. Analysis revealed that few decliners discussed their decision with general practitioners or genetic counsellors. Family members were commonly involved to varying degrees, with participants either (1) making group decisions with family members, (2) feeling persuaded by family members to either accept or decline testing, (3) discussing the test but making their own decision. A minority did not discuss testing with family members while making their decision. This research reveals the health communication activities of an understudied group, those declining predictive testing, and indicates that for many, health professionals play a minor role in the decision compared to family.
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Metadata
Title
Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline
Publication date
01-10-2018
Published in
Familial Cancer / Issue 4/2018
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-018-0078-2

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