Informing family members of individuals with Lynch syndrome: a guideline for clinical geneticists

Fred H. Menko*, Cora M. Aalfs, Lidewij Henneman, Yrrah Stol, Miranda Wijdenes, Ellen Otten, Marleen M. J. Ploegmakers, Johan Legemaate, Ellen M. A. Smets, Guido M. W. R. de Wert, Aad Tibben

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


The diagnosis of Lynch syndrome can lead to the prevention of colorectal cancer through periodic colonoscopies and removal of premalignant lesions in susceptible individuals. Therefore, predisposed individuals identified by mutation analysis are advised to inform their at-risk relatives about the options of predictive DNA testing and preventive measures. However, it has now been established that more than half of these relatives do not receive the necessary information. Barriers in conveying information include family communication problems and variable attitudes and practice among clinical geneticists. In this complex field, both medical, psychological, ethical and juridical aspects deserve consideration. Here we summarize the development of a revised guideline for clinical geneticists that allows a more active role of the geneticist, aimed at improving procedures to inform family members in Lynch syndrome and other hereditary and familial cancer syndromes.
Original languageEnglish
Pages (from-to)319-324
JournalFamilial Cancer
Issue number2
Publication statusPublished - Jun 2013


  • Hereditary cancer
  • Lynch syndrome
  • Genetic counselling
  • Family communication
  • Duty to warn

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