Genetic counseling for prenatal testing: where is the discussion about disability?
Genetic counseling for prenatal testing: where is the discussion about disability?
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产前检测的遗传咨询：关于残疾的讨论在哪里？
DOI：
10.1007/s10897-012-9484-z
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发表时间：
2012
影响因子：
1.9
通讯作者：
Ormond,Kelly
中科院分区：
文献类型：
--
作者：
Farrelly,Ellyn;Cho,MildredK;Erby,Lori;Roter,Debra;Stenzel,Anabel;Ormond,Kelly
几乎没有数据揭示遗传咨询师如何谈论产前环境中的残疾。我们通过遗传咨询视频项目对2003-4年间进行的模拟患者(SP)遗传咨询会议的93份现有记录进行了定性分析。我们发现，大多数遗传咨询师(95%)关注残疾的身体方面，而较少(27%)讨论社会方面。此外，很少有遗传咨询师(38%)询问患者残疾的个人经历。在讨论怀孕被诊断为残疾时的可选方案时，大多数遗传咨询师提到了终止妊娠(86%)，而很少有人提到继续怀孕(37%)或收养(13%)。只有一半的遗传咨询师问SP她是否考虑过如何使用产前筛查的结果。为了更好地促进与患者价值观一致的知情决策，我们建议遗传咨询师让产前患者参与更深入的讨论，讨论他们为残疾儿童育儿的能力和意愿。
There are little data revealing how genetic counselors talk about disability in the prenatal setting. We performed a qualitative analysis of 93 existing transcripts from simulated patient (SP) genetic counseling sessions conducted in 2003–4 through the Genetic Counseling Video Project. We found that most genetic counselors (95%) focused on the physical aspects of disability while fewer (27%) discussed the social aspects. In addition, few genetic counselors (38%) asked patients about personal experiences with disability. When discussing options available if a pregnancy were diagnosed with a disability, most genetic counselors mentioned termination (86%) while fewer mentioned the continuation of the pregnancy (37%) or adoption (13%). Only half of the genetic counselors asked the SP if she had thought about how she might use the results of prenatal screening. To better facilitate informed decision-making that is consistent with patient values, we recommend genetic counselors engage prenatal patients in a deeper discussion about their ability and willingness to parent a child with a disability.