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Open Access 01-01-2016 | Original Article

Genetic testing for Lynch syndrome: family communication and motivation

Authors: Celine H. M. Leenen, Mariska den Heijer, Conny van der Meer, Ernst J. Kuipers, Monique E. van Leerdam, Anja Wagner

Published in: Familial Cancer | Issue 1/2016

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.

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Title: Genetic testing for Lynch syndrome: family communication and motivation
Authors: Celine H. M. Leenen
Mariska den Heijer
Conny van der Meer
Ernst J. Kuipers
Monique E. van Leerdam
Anja Wagner
Publication date: 01-01-2016
Publisher: Springer Netherlands
Published in: Familial Cancer / Issue 1/2016
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI: https://doi.org/10.1007/s10689-015-9842-8

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