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泰-萨克斯病筛查:社会和心理影响

Tay-Sachs screening: social and psychological impact.

作者信息

Childs B, Gordis L, Kaback M M, Kazazian H H

出版信息

Am J Hum Genet. 1976 Nov;28(6):550-8.

Abstract

Participants in two Tay-Sachs screening programs were generally satisifed with the organization of the tests and the results. There was no evidence of adverse impact on reproductive plans or interpersonal relations, and the respondents professed to believe in the value of screening. While the carriers discussed their condition freely with others and were no less favorable to the idea of screening than the noncarriers, about one-half of their number expressed discomfort in being told they were heterozygotes. These feelings were allayed by counseling, but there was evidence of some residual unease. It is suggested that this anxiety would be less prominent and more easily reduced if screening were done under conditions of ordinary primary medical care rather than outside the conventional system.

摘要

参与两项泰-萨克斯病筛查项目的参与者总体上对检测的组织安排和结果感到满意。没有证据表明该筛查对生育计划或人际关系产生不利影响,而且受访者表示相信筛查的价值。虽然携带者能自如地与他人讨论自己的情况,并且他们对筛查的接受程度并不亚于非携带者,但约一半的携带者表示在被告知自己是杂合子时感到不适。咨询缓解了这些情绪,但仍有一些残余的不安迹象。有人认为,如果筛查是在普通初级医疗保健条件下进行,而非在传统体系之外,这种焦虑就不会那么突出,也更容易减轻。

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