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对美国国家镰状细胞病项目现状的思考。

Reflections on the current status of the national sickle cell disease program in the United States.

作者信息

Scott R B

出版信息

J Natl Med Assoc. 1979 Jul;71(7):679-81.

Abstract

Some clouds of concern now appear on the horizon for the national sickle cell disease program. There is flagging general attention by the black population and a dilution of interest in and visibility of the sickle cell problem brought about by political maneuvering to bring the program under the legislative umbrella of many other genetic diseases (which occur predominantly in Caucasians). In addition, the federal program has recently phased-out six comprehensive sickle cell centers and imposed budgetary cutbacks in the remaining centers. The victims of this disease, the black population in general, and the researchers and investigators who seek ways to bring this disease under control need reassurance from the current national administration that the sickle cell program will not be permitted to die a slow death from financial attrition, attenuation of interest, and skillful neglect leading to the phasing-out of another "minority project." The national sickle cell program, in the relatively short span of six years, has made significant and notable progress not only in research endeavor but also in improved patient care and community-wide education. In this context, certainly, the positive aspects of the national sickle cell disease program continue to far outweigh any negative ones.(1)

摘要

目前,国家镰状细胞病项目似乎出现了一些令人担忧的迹象。黑人对该项目的总体关注度在下降,由于政治手段将该项目纳入许多其他主要发生在白种人中的遗传疾病的立法框架下,镰状细胞病问题的关注度和可见度被稀释。此外,联邦项目最近已逐步淘汰了六个综合性镰状细胞中心,并削减了其余中心的预算。这种疾病的受害者、广大黑人以及寻求控制这种疾病方法的研究人员和调查人员需要现任国家行政部门给予保证,即镰状细胞病项目不会因资金损耗、关注度降低以及巧妙的忽视而逐渐消亡,导致另一个“少数族裔项目被逐步淘汰”。国家镰状细胞病项目在相对较短的六年时间里,不仅在研究工作方面取得了显著进展,而且在改善患者护理和社区教育方面也取得了显著进展。在这种情况下,国家镰状细胞病项目的积极方面无疑仍远远超过任何消极方面。(1)

相似文献

5
Neonatal screening and genetic counseling for sickle cell trait.镰状细胞性状的新生儿筛查与遗传咨询。
Am J Dis Child. 1985 Mar;139(3):241-4. doi: 10.1001/archpedi.1985.02140050035016.

本文引用的文献

1
The Inheritance of Sickle Cell Anemia.镰状细胞贫血的遗传
Science. 1949 Jul 15;110(2846):64-6. doi: 10.1126/science.110.2846.64.
2
Sickle cell anemia a molecular disease.镰状细胞贫血是一种分子疾病。
Science. 1949 Nov 25;110(2865):543-8. doi: 10.1126/science.110.2865.543.
4
Sickle cell crisis terminated by intravenous urea in sugar solutions--a preliminary report.
Am J Med Sci. 1971 Jun;261(6):309-24. doi: 10.1097/00000441-197106000-00002.
8
Prenatal diagnosis of sickle-cell anemia.
N Engl J Med. 1976 May 6;294(19):1039-40. doi: 10.1056/NEJM197605062941905.

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