"You're one of us now": young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP)

American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
Rony E DuncanMartin B Delatycki

Abstract

There has been much debate about the psychosocial effects of predictive genetic testing in minors. The majority of this debate has been theoretical, with little empirical evidence published. We conducted in-depth interviews with 18 young people who had undergone testing, to explore the range of harms and benefits that they perceived were associated with their tests. Participants were eight individuals who were tested for Huntington disease (two gene-positive, six gene-negative) and ten who were tested for familial adenomatous polyposis (five gene-positive, five gene-negative). At the time of their test they ranged from 10 to 25 years of age. When interviewed they ranged from 14 to 26 years of age. Harms described included knowledge of future illness, witnessing distress in parents, negative effects on family relationships and friendships, effects upon employment and school, experiencing regret, feeling guilty and having to confront difficult issues. Benefits included knowledge of gene-negative status, relief from uncertainty, witnessing relief in parents, feeling able to plan for the future, positive effects on family relationships and friendships, feeling empowered and experiencing a sense of clarity about what is important in...Continue Reading

References

Sep 1, 1992·American Journal of Medical Genetics·A TibbenD Stronks
Sep 15, 1991·American Journal of Medical Genetics·M A NanceL L Heston
Sep 15, 1994·American Journal of Medical Genetics·A M Codori, J Brandt
Nov 1, 1996·Archives of Pediatrics & Adolescent Medicine·A M CodoriF M Giardiello
Jun 1, 1997·The Journal of Medicine and Philosophy·E W Clayton
Jan 24, 1998·American Journal of Medical Genetics·T B WahlinM Anvret
Apr 16, 1999·BMJ : British Medical Journal·D L Dickenson
Apr 16, 1999·BMJ : British Medical Journal·K Abbasi
May 21, 1999·BMJ : British Medical Journal·G Geller
Feb 9, 2000·Archives of Pediatrics & Adolescent Medicine·B S Elger, T W Harding
May 2, 2000·Qualitative Health Research·M ShepherdA C Sparkes
May 29, 2000·Pediatric Annals·J W Hanson, E J Thomson
Jun 5, 2001·Pediatrics·UNKNOWN Committee on Bioethics
Jul 27, 2001·Diabetic Medicine : a Journal of the British Diabetic Association·M ShepherdA T Hattersley
Aug 3, 2001·Journal of Medical Genetics·S MichieT M Marteau
Dec 11, 2002·Kennedy Institute of Ethics Journal·Lainie Friedman Ross
Dec 21, 2002·American Journal of Medical Genetics. Part a·Ann-Marie CodoriFrancis M Giardiello
Jun 5, 2003·American Journal of Medical Genetics. Part a·Susan MichieTheresa M Marteau
Sep 17, 2003·Clinical Genetics·E W AlmqvistUNKNOWN Canadian Collaborative Study of Predictive Testing
Mar 11, 2004·Health Psychology : Official Journal of the Division of Health Psychology, American Psychological Association·Reinier TimmanAad Tibben
Oct 8, 2004·Journal of Paediatrics and Child Health·R E Duncan
Jun 17, 2005·Journal of Genetic Counseling·Roslyn J Tassicker
Jul 19, 2005·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Rony E DuncanMartin B Delatycki
Nov 17, 2006·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Lesley AndrewsBettina Meiser
Jan 24, 2007·Lancet·Francis O Walker
Aug 1, 2007·American Journal of Medical Genetics. Part a·Rony E DuncanMartin B Delatycki
Aug 1, 2007·Diseases of the Colon and Rectum·L AndrewsB Meiser

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Citations

Mar 19, 2008·Journal of Genetic Counseling·Kathleen J H SparbelJane S Paulsen
May 30, 2009·Journal of Genetic Counseling·Heather A DouglasRobin E Grubs
Mar 24, 2010·Journal of Genetic Counseling·Nancy R DowningJane S Paulsen
Jun 10, 2010·European Journal of Human Genetics : EJHG·Fiona UlphEllen Townsend
Mar 2, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Cara MandMartin B Delatycki
Aug 21, 2010·Genetic Testing and Molecular Biomarkers·Janet K WilliamsUNKNOWN I-RESPOND-HD Investigators of the Huntington Study Group
Jul 24, 2008·Journal of Pediatric Psychology·Benjamin Wilfond, Lainie Friedman Ross
Oct 1, 2011·Journal of Medical Ethics·Lilian Liou CohenSiobhan M Dolan
Aug 10, 2010·Western Journal of Nursing Research·Lynn RewDan Bonevac
Jun 3, 2011·Clinical Nursing Research·Martha DriessnackJane S Paulsen
Feb 13, 2013·Pediatrics·Ruqayyah Abdul-KarimSara Chandros Hull
Sep 3, 2013·Journal of Genetic Counseling·Willem EijzengaEveline M A Bleiker
Oct 12, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Layla ShahmirzadiKelly D Farwell Gonzalez
Oct 3, 2009·Journal for Specialists in Pediatric Nursing : JSPN·Lynn RewDaniel Bonevac
Apr 30, 2015·Journal of Genetic Counseling·Jesús Rivera-NavarroNatividad Mariscal
Oct 1, 2015·Journal of Adolescent and Young Adult Oncology·Jessica Grubman, Afsaneh Barzi
Jul 16, 2015·European Journal of Human Genetics : EJHG·Lea GodinoHeather Skirton
Apr 13, 2017·Expert Review of Molecular Diagnostics·Liza-Marie JohnsonKim E Nichols
Apr 8, 2018·Journal of Genetic Counseling·Elisabeth WinnbergAnette Hagberg
Jun 25, 2016·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Maya Sabatello, Paul S Appelbaum
Jul 14, 2018·Journal of Adolescent and Young Adult Oncology·Rowan Forbes ShepherdLaura E Forrest
Oct 30, 2018·Journal of Huntington's Disease·Miranda F Lewit-MendesMartin B Delatycki
Jun 26, 2009·Current Opinion in Psychiatry·Linda D Cameron, Cecile Muller
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
Sep 22, 2010·Issues in Mental Health Nursing·Lynn RewDaniel Bonevac
May 31, 2012·Clinical Genetics·R MacLeodUNKNOWN Editorial Committee and Working Group ‘Genetic Testing Counselling’ of the European Huntington Disease Network
Jul 4, 2019·The Hastings Center Report·Maya Sabatello, Eric Juengst
Aug 23, 2019·Molecular Genetics & Genomic Medicine·Francis RamondElisabeth Ollagnon-Roman
Mar 13, 2020·Journal of Genetic Counseling·Kristine H TilleråsCharlotte von der Lippe
May 7, 2010·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Christopher H WadeColleen M McBride
Oct 14, 2014·Clinical Genetics·M McAllister, A Dearing
Jan 15, 2017·Journal of Medical Genetics·Marcela GargiuloAlexandra Durr
Aug 14, 2008·American Journal of Medical Genetics. Part a·Fiona H Richards
May 6, 2016·American Journal of Medical Genetics. Part a·Sophia B HufnagelArmand H Matheny Antommaria
Aug 20, 2018·Journal of Community Genetics·Janella HudsonSusan T Vadaparampil

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