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. 2016 Jan;15(1):63-73.
doi: 10.1007/s10689-015-9842-8.

Genetic testing for Lynch syndrome: family communication and motivation

Celine H M Leenen  1 , Mariska den Heijer  2   3 , Conny van der Meer  2 , Ernst J Kuipers  4   5 , Monique E van Leerdam  4   6 , Anja Wagner  2
Affiliations

Genetic testing for Lynch syndrome: family communication and motivation

Celine H M Leenen et al. Fam Cancer. 2016 Jan.

Abstract

Current genetic counselling practice for Lynch syndrome (LS) relies on diagnosed index patients to inform their biological family about LS, referred to as the family-mediated approach. The objective of this study was to evaluate this approach and to identify factors influencing the uptake of genetic testing for LS. In 59 mutation carriers, 70 non carriers and 16 non-tested relatives socio-demographic characteristics, family communication regarding LS, experiences and attitudes towards the family-mediated approach and motivations for genetic testing, were assessed. The majority of all respondents (73 %) were satisfied with the family-mediated approach. Nevertheless, 59 % of the respondents experienced informing a family member and 57 % being informed by a family member as burdensome. Non-tested differed from tested respondents, in that they were younger, less closely related to the index patient and a lower proportion had children. The most important reasons for declining genetic testing were (1) anticipating problems with life insurance and mortgage, (2) being content with life as it is, and (3) not experiencing any physical complaints. In conclusion, the majority of respondents consider the current family-mediated information procedure acceptable, although the provision of information on LS by relatives may be burdensome. Special attention should be paid to communication of LS to more distant relatives.

Keywords: Family communication; Genetic testing; Lynch syndrome; Motivation.

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Figures

Fig. 1
Fig. 1
Flowchart of the study procedure
Fig. 2
Fig. 2
Motivations of non-tested respondents for not opting for the genetic test for LS (N = 16), NA = not available
See this image and copyright information in PMC

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