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伊朗伊斯兰共和国的地中海贫血遗传咨询

Genetic counseling for thalassemia in the Islamic Republic of Iran.

作者信息

Strauss Bernard S

机构信息

Department of Molecular Genetics and Cell Biology, University of Chicago, Chicago, IL 60637, USA.

出版信息

Perspect Biol Med. 2009 Summer;52(3):364-76. doi: 10.1353/pbm.0.0093.

Abstract

The response of groups to pressing medical problems cannot be predicted on theoretical grounds. An example is the program for the control of beta-thalassemia in Iran, a country with a tradition of inbreeding and a conservative religious culture, and in which thalassemia is common. Thalassemia is largely treatable, but the treatment is lifelong and onerous and creates a serious economic burden for the individual family and for the national health budget. The genetics are simple, and inexpensive screening tests are available to identify carriers. An Iranian program requiring mandatory premarital screening was started in 1997, and between 1998 and 2005 the laws of the country were modified to permit abortion of affected fetuses. The story of this effort indicates how a country with a social system very different from that of the United States responded to a medical problem with significant ethical overtones. The Iranian experience supports the optimistic view that societies can react to pressing problems with pragmatic rather than theoretical solutions.

摘要

无法基于理论依据预测各群体对紧迫医疗问题的反应。一个例子是伊朗控制β地中海贫血的项目。伊朗是一个有近亲结婚传统和保守宗教文化的国家,地中海贫血在该国很常见。地中海贫血在很大程度上是可治疗的,但治疗是终身的且繁重,给个体家庭和国家卫生预算造成严重经济负担。其遗传学情况简单,且有廉价的筛查测试可用于识别携带者。伊朗于1997年启动了一项要求强制婚前筛查的项目,在1998年至2005年期间,该国法律进行了修改,允许对受影响胎儿进行堕胎。这项努力的故事表明,一个社会制度与美国截然不同的国家是如何应对一个带有重大伦理色彩的医疗问题的。伊朗的经验支持了一种乐观观点,即社会能够以务实而非理论性的解决方案来应对紧迫问题。

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