Balfour-Lynn I, Madge S, Dinwiddie R
Respiratory Unit, Great Ormond Street Hospital for Children NHS Trust, London.
Arch Dis Child. 1995 Feb;72(2):167-8. doi: 10.1136/adc.72.2.167.
Altogether 114 parents of patients attending a cystic fibrosis clinic and 27 regional genetics units were surveyed for their views on whether healthy siblings should be tested for carrier status during childhood. Most parents wanted to know their child's carrier status and felt it was their right; almost all would tell the children if they were carriers. However, 37% of the units never tested siblings and 40% said the parents had no right to this knowledge. Furthermore, 60% would withhold the information from parents.
我们对114位就诊于囊性纤维化诊所的患者的父母以及27个地区遗传学单位进行了调查，询问他们对于是否应该在儿童时期对健康的兄弟姐妹进行携带者状态检测的看法。大多数父母想知道自己孩子的携带者状态，并认为这是他们的权利；几乎所有父母都会告诉孩子他们是否为携带者。然而，37%的单位从未对兄弟姐妹进行检测，40%的单位表示父母无权了解这一信息。此外，60%的单位会对父母隐瞒这一信息。
