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从制定指南到实施立法:美国新生儿和儿童遗传性疾病咨询委员会在推进和改善新生儿筛查方面的行动。

From developing guidelines to implementing legislation: actions of the US Advisory Committee on Heritable Disorders in Newborns and Children toward advancing and improving newborn screening.

机构信息

Leonard M. Miller School of Medicine, University of Miami, Miami, FL, USA.

出版信息

Semin Perinatol. 2010 Apr;34(2):121-4. doi: 10.1053/j.semperi.2009.12.004.

DOI:10.1053/j.semperi.2009.12.004
PMID:20207261
Abstract

Federal advisory committees (or commissions, councils, or task forces) are created either by congressional action or a federal department to bring together a variety of viewpoints on specific policy issues. The committees or advisory bodies are generally directed to advise various bodies within the government, either by congressional mandate, government decree, or executive order. The committees are often created to aid the government in subject matters with difficult issues. In the Department of Health and Human Services (HHS), current advisory committees range from advising the Secretary, Department of Health and Human Services, on immunization practices, to organ donation, blood safety, to issues related to newborn and child screening. This article describes the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. Its history offers insight into connection of the development of policy guidelines and the creation of legislation to implement that policy. Its current activities have affected and will continue to affect not only state newborn screening programs but also the policy and practice of screening children for heritable disorders.

摘要

联邦顾问委员会(或委员会、理事会或工作组)由国会采取行动或联邦部门设立,旨在汇集对特定政策问题的各种观点。这些委员会或顾问机构通常受国会授权、政府法令或行政命令的指示,向政府内部的各种机构提供建议。这些委员会通常是为了协助政府处理具有棘手问题的事项而设立的。在卫生与公众服务部(HHS),现有的顾问委员会的建议范围从向卫生与公众服务部部长就免疫接种实践提供建议,到器官捐赠、血液安全,再到与新生儿和儿童筛查相关的问题。本文介绍了卫生与公众服务部部长关于新生儿和儿童遗传性疾病的顾问委员会。它的历史为我们提供了一个深入了解政策指导方针的制定和立法的制定之间联系的视角,以实施该政策。它目前的活动不仅影响了州新生儿筛查计划,而且还影响了遗传性疾病儿童筛查的政策和实践。

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