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“艰难时刻,艰难抉择”:一项关于澳大利亚产前遗传咨询的研究

"Testing times, challenging choices": an Australian study of prenatal genetic counseling.

作者信息

Hodgson Jan M, Gillam Lynn H, Sahhar Margaret A, Metcalfe Sylvia A

机构信息

Genetic Education and Health Research, Murdoch Childrens Research Institute, Royal Children's Hospital, Victoria, 3052, Australia.

出版信息

J Genet Couns. 2010 Feb;19(1):22-37. doi: 10.1007/s10897-009-9248-6. Epub 2009 Oct 2.

Abstract

In many countries pregnant women deemed to be at increased risk for fetal anomaly following a screening test may attend a genetic counseling session to receive information and support in decision-making about subsequent diagnostic testing. This paper presents findings from an Australian study that explored 21 prenatal genetic counseling sessions conducted by five different genetic counselors. All were attended by pregnant women who had received an increased risk result from a maternal serum screening (MSS) test and who were offered a diagnostic test. Qualitative methods were used to analyze the content and structure of sessions and explore the counseling interactions. Findings from this cohort demonstrate that, within these prenatal genetic counseling sessions, counselor dialogue predominated. Overall the sessions were characterized by: a) an emphasis on information-giving b) a lack of dialogue about relevant sensitive topics such as disability and abortion. Arguably, this resulted in missed opportunities for client deliberation and informed decision-making. These findings have implications for the training and practice of genetic counselors and all healthcare professionals who communicate with women about prenatal testing.

摘要

在许多国家,经筛查测试后被认为胎儿异常风险增加的孕妇可能会参加遗传咨询会议,以获取信息并在有关后续诊断测试的决策方面获得支持。本文介绍了一项澳大利亚研究的结果,该研究探讨了由五位不同的遗传咨询师进行的21次产前遗传咨询会议。所有会议的参与者均为孕妇,她们的母血清筛查(MSS)测试结果显示风险增加,并被提供了诊断测试。采用定性方法分析会议的内容和结构,并探讨咨询互动。该队列研究的结果表明,在这些产前遗传咨询会议中,咨询师的对话占主导地位。总体而言,这些会议的特点是:a)强调提供信息;b)缺乏关于残疾和堕胎等相关敏感话题的对话。可以说,这导致了客户审议和知情决策的机会丧失。这些发现对遗传咨询师以及所有与孕妇就产前检测进行沟通的医疗保健专业人员的培训和实践具有启示意义。

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