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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DOI：
10.1007/s10897-012-9534-6
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发表时间：
2012-12-01
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, Mildred K.;Ormond, Kelly
几乎没有数据表明遗传咨询师如何谈论产前环境中的残疾。我们对 2003 年 4 月通过遗传咨询视频项目进行的模拟患者 (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，而很少（27%）讨论社会方面。此外，很少有遗传咨询师（38%）询问患者有关残疾的个人经历。当讨论妊娠被诊断为残疾时可用的选择时，大多数遗传咨询师提到终止妊娠（86%），而很少有人提到继续妊娠（37%）或收养（13%）。只有一半的遗传咨询师询问 SP 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就他们养育残疾儿童的能力和意愿进行更深入的讨论。
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.