title: Genetic testing for Lynch syndrome: family communication and motivation.
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.
authors.affiliation: Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, 's-Gravendijkwal 230, 3015 CE, Rotterdam, The Netherlands. c.leenen@vumc.nl.
authors.forename: Celine H M
authors.initials: CH
authors.lastname: Leenen
authors.affiliation: Department of Clinical Genetics, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.|Department of Medical Psychology and Psychotherapy, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
authors.forename: Mariska den
authors.initials: Md
authors.lastname: Heijer
authors.affiliation: Department of Clinical Genetics, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
authors.forename: Conny
authors.initials: C
authors.lastname: van der Meer
authors.affiliation: Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, 's-Gravendijkwal 230, 3015 CE, Rotterdam, The Netherlands.|Department of Internal Medicine, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
authors.forename: Ernst J
authors.initials: EJ
authors.lastname: Kuipers
authors.affiliation: Department of Gastroenterology and Hepatology, Erasmus MC, University Medical Center, 's-Gravendijkwal 230, 3015 CE, Rotterdam, The Netherlands.|Department of Gastroenterology and Hepatology, National Cancer Institute, Amsterdam, The Netherlands.
authors.forename: Monique E
authors.initials: ME
authors.lastname: van Leerdam
authors.affiliation: Department of Clinical Genetics, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
authors.forename: Anja
authors.initials: A
authors.lastname: Wagner
mesh_terms: D001290:Attitude; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics*; D003142:Communication; D003430:Cross-Sectional Studies; D005190:Family; D005195:Family Relations; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D006801:Humans; D008297:Male; D009042:Motivation; D011795:Surveys and Questionnaires
keywords: Family communication; Genetic testing; Lynch syndrome; Motivation