Ternby Ellen, Axelsson Ove, Annerén Göran, Lindgren Peter, Ingvoldstad Charlotta
Department of Women's and Children's Health, Uppsala University, 751 85, Uppsala, Sweden.
Centre for Clinical Research Sörmland, Uppsala University, Eskilstuna, Sweden.
J Community Genet. 2016 Jul;7(3):237-42. doi: 10.1007/s12687-016-0272-6. Epub 2016 Jul 20.
To investigate if actual knowledge of Down syndrome (DS), influences the decision to accept or decline prenatal diagnosis (PND). Secondary aims were to elucidate reasons for accepting or declining PND and investigate differences between the accepting and declining group in perceived information, knowing someone with DS and thoughts about decision-making. A questionnaire was completed by 76 pregnant women who underwent invasive testing and 65 women who declined tests for chromosomal aberrations in Uppsala, Sweden. Apart from one question no significant differences were found in knowledge of DS between women declining or accepting PND for DS. Both groups had varying and in several respects low levels of knowledge about DS and its consequences. Most common reasons to accept PND were 'to ease my worries' and 'to do all possible tests to make sure the baby is healthy'. Corresponding statements declining PND were 'termination of pregnancy is not an option' and 'because invasive tests increase the risk of miscarriage'. More women declining PND knew someone with DS. Knowledge of DS at these levels is not a major factor when women decide to accept or decline PND for DS. Their choice is mostly based on opinions and moral values.
为了调查对唐氏综合征(DS)的实际了解是否会影响接受或拒绝产前诊断(PND)的决定。次要目的是阐明接受或拒绝PND的原因,并调查接受组和拒绝组在感知信息、认识患有DS的人以及决策想法方面的差异。瑞典乌普萨拉的76名接受侵入性检测的孕妇和65名拒绝染色体异常检测的女性完成了一份问卷。除了一个问题外,拒绝或接受DS的PND的女性在DS知识方面未发现显著差异。两组对DS及其后果的了解程度各不相同,且在几个方面都较低。接受PND最常见的原因是“减轻我的担忧”和“进行所有可能的检测以确保宝宝健康”。拒绝PND的相应说法是“终止妊娠不是一个选择”和“因为侵入性检测会增加流产风险”。更多拒绝PND的女性认识患有DS的人。在女性决定接受或拒绝DS的PND时,这种程度的DS知识不是一个主要因素。她们的选择大多基于观点和道德价值观。