title: Informing family members of individuals with Lynch syndrome: a guideline for clinical geneticists.
abstract: 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.
authors.affiliation: Department of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands. fh.menko@vumc.nl
authors.forename: Fred H
authors.initials: FH
authors.lastname: Menko
authors.forename: Cora M
authors.initials: CM
authors.lastname: Aalfs
authors.forename: Lidewij
authors.initials: L
authors.lastname: Henneman
authors.forename: Yrrah
authors.initials: Y
authors.lastname: Stol
authors.forename: Miranda
authors.initials: M
authors.lastname: Wijdenes
authors.forename: Ellen
authors.initials: E
authors.lastname: Otten
authors.forename: Marleen M J
authors.initials: MM
authors.lastname: Ploegmakers
authors.forename: Johan
authors.initials: J
authors.lastname: Legemaate
authors.forename: Ellen M A
authors.initials: EM
authors.lastname: Smets
authors.forename: Guido M W R
authors.initials: GM
authors.lastname: de Wert
authors.forename: Aad
authors.initials: A
authors.lastname: Tibben
mesh_terms: D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics*; D017007:Duty to Warn / Q000941:ethics / Q000523:psychology; D005190:Family; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D006801:Humans
references.citation: Clin Genet. 2007 Dec;72(6):562-7
references.pmid: 17922849
references.citation: Fam Cancer. 2006;5(1):103-16
references.pmid: 16528614
references.citation: Eur J Hum Genet. 2005 Apr;13(4):401-8
references.pmid: 15657617
references.citation: Semin Oncol. 2007 Oct;34(5):435-43
references.pmid: 17920900
references.citation: J Med Ethics. 2010 Jul;36(7):391-5
references.pmid: 20605992
references.citation: Med J Aust. 2006 Sep 18;185(6):301-2
references.pmid: 16999667
references.citation: Clin Genet. 2011 Mar;79(3):236-42
references.pmid: 21070212
references.citation: Trends Biotechnol. 2002 Feb;20(2):85-6
references.pmid: 11814599
references.citation: Eur J Hum Genet. 2007 Jun;15(6):612-8
references.pmid: 17392704
references.citation: Crit Rev Oncol Hematol. 2009 Feb;69(2):98-107
references.pmid: 19036602
references.citation: CMAJ. 2008 Feb 26;178(5):593-5
references.pmid: 18299550
references.citation: Eur J Hum Genet. 2005 Apr;13(4):397-8
references.pmid: 15702129
references.citation: Fam Cancer. 2012 Sep;11(3):467-71
references.pmid: 22684865
references.citation: Cancer Treat Res. 2010;155:1-14
references.pmid: 20517685
references.citation: J Med Genet. 2007 Nov;44(11):732-8
references.pmid: 17630403
references.citation: Clin Genet. 2009 Feb;75(2):124-32
references.pmid: 19215246
references.citation: Genet Med. 2008 Mar;10(3):167-72
references.pmid: 18344705
references.citation: BMJ. 2004 Jul 17;329(7458):165-7
references.pmid: 15258076
references.citation: Fam Cancer. 2010 Dec;9(4):691-703
references.pmid: 20852947
references.citation: J Genet Couns. 2010 Aug;19(4):330-42
references.pmid: 20379768
references.citation: Acta Oncol. 2009;48(7):999-1009
references.pmid: 19636983
references.citation: J Med Genet. 2006 Aug;43(8):665-70
references.pmid: 16371501
references.citation: Eur J Hum Genet. 2008 Oct;16(10):1201-7
references.pmid: 18478037
references.citation: J Med Ethics. 2003 Apr;29(2):70-3
references.pmid: 12672885