Attitudes regarding predictive genetic testing in minors: a survey of European clinical geneticists

American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
Pascal BorryKris Dierickx

Abstract

The aim of this study is to gather information from European clinical geneticists about their practices and attitudes with regard to presymptomatic and predictive genetic testing in minors. European clinical institutes where genetic counseling is offered to patients were contacted. One hundred seventy-seven of the 287 eligible respondents (63%) answered a questionnaire. There was strongest support for testing young children when it provides a clear medical benefit, such as in the case of FAP and MEN2A. However, there is disagreement about when to provide predictive genetic testing for childhood-onset disorders for which therapeutic or preventive measures exist with some supporting the rule of earliest onset and others giving parents wider discretion. However, for childhood-onset disorders that do not have therapeutic measures, the majority of the respondents is unwilling to provide a presymptomatic or predictive genetic test. With respect to adolescents, many held a cautious position regarding presymptomatic and predictive genetic testing. Most clinical geneticists were unwilling to provide a presymptomatic or predictive genetic test for adult-onset diseases, except if it might provide a medical benefit. Although adolescents mi...Continue Reading

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Citations

Apr 25, 2009·Familial Cancer·Suzanne C O'NeillKenneth P Tercyak
Oct 9, 2008·Journal of Genetic Counseling·Ellen Wright Clayton
Mar 12, 2009·European Journal of Human Genetics : EJHG·Pascal BorryUNKNOWN Public and Professional Policy Committee (PPPC) of the European Society of Human Genetics (ESHG)
Apr 16, 2009·European Journal of Human Genetics : EJHG·Marjan De RademaekerInge Liebaers
Jun 10, 2010·European Journal of Human Genetics : EJHG·Fiona UlphEllen Townsend
Jul 24, 2008·Journal of Pediatric Psychology·Benjamin Wilfond, Lainie Friedman Ross
May 11, 2010·Archives de pédiatrie : organe officiel de la Sociéte française de pédiatrie·L JolyUNKNOWN groupe de génétique prédictive et le groupe de réflexion autour du diagnostic présymptomatique chez les mineurs
Jan 2, 2010·Medicina clínica·Carmen AyusoDiego Gracia
Jul 21, 2009·Seminars in Nephrology·Lisa M Guay-Woodford, Nine V A M Knoers
Oct 3, 2009·Journal for Specialists in Pediatric Nursing : JSPN·Lynn RewDaniel Bonevac
Sep 19, 2014·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Danya F VearsClare Delany
Mar 4, 2010·Journal of Child Neurology·Jessica HartleyGrace Yoon
Nov 4, 2010·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Jennifer M TaberSancy A Leachman
Jan 18, 2008·American Journal of Medical Genetics. Part C, Seminars in Medical Genetics·Lainie Friedman Ross
Aug 6, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Erisa Mwaka, Lyn Horn
May 29, 2018·Journal of Empirical Research on Human Research Ethics : JERHRE·Michelle L McGowanMelanie F Myers
Mar 1, 2008·Personalized Medicine·Pascal Borry, Kris Dierickx

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