Experiences of predictive testing in young people at risk of Huntington's disease, familial cardiomyopathy or hereditary breast and ovarian cancer.

Macleod R, Beach A, Henriques S, Knopp J, Nelson K, Kerzin-Storrar L.

Source

1] Manchester Centre for Genomic Medicine, Institute of Human Development, Faculty of Medical and Human Sciences, University of Manchester, Manchester Academic Health Science Centre (MAHSC), Manchester, UK [2] Manchester Centre for Genomic Medicine, Central Manchester University Hospitals NHS Foundation Trust, MAHSC, Manchester, UK.

Abstract

While debate has focused on whether testing of minors for late onset genetic disorders should be carried out if there is no medical benefit, less is known about the impact on young people (<25 10="" 15-25="" 16="" 17="" 1="" 2013="" 2="" 59="" 61="" a="" advance="" against="" age.="" aged="" ages="" agreed="" all="" among="" analysed="" analysis.="" and="" as="" at="" audiotaped="" autonomous="" be="" before="" but="" cardiomyopathy="" clinical="" conditions="" congruent="" consecutive="" counselling="" decision="" differences="" dilated="" doi:10.1038="" ejhg.2013.143.="" emerged="" experiences="" expressed="" facilitating="" families="" family="" favour="" fcm="" for="" from="" genetic="" genetics="" grandparents.="" groups="" had="" have="" having="" hboc="" hd="" human="" in="" influence="" information="" interpretative="" interviews="" invited="" involvement="" journal="" july="" likely="" looked="" manchester="" many="" more="" needs="" none="" not="" of="" often="" online="" onset="" opinions="" options="" or="" p="" parent="" parents="" participants="" participate.="" participate="" people.european="" people="" phenomenological="" predictive="" pretest="" proposed="" publication="" range="" rather="" rca="" regret="" saw="" screening="" series="" service="" sometimes="" source="" strong="" support.="" symptoms.="" tailoring="" telephone="" test="" tested.="" testing="" the="" thirty-six="" three="" to="" transcribed="" treatment.="" using="" usually="" value="" variable="" views="" was="" we="" went="" were="" whereas="" who="" with="" years="" young="" ypertrophic="">