University of Utah, Salt Lake City, Utah 84112, USA.
Pediatrics. 2013 Jan;131(1):120-7. doi: 10.1542/peds.2012-0852. Epub 2012 Dec 3.
The storage and use of residual newborn screening dried blood specimens has generated significant controversy in the past 5 years, primarily because of public concerns over the lack of parental knowledge and consent for these activities. State policies addressing the management of these specimens vary widely, and there is currently little guidance to aid new state policy development to address the concerns of program professionals, investigators, and the general public. This article offers guidance for state policy based on multiple sources of data, including public attitudes, professional statements, state experience, and an analysis of the ethical, social, legal, and biomedical issues from a multidisciplinary group of scholars. This guidance will be useful for state programs that seek to develop policies that are informed by a contemporary analysis of the key ethical, legal, and social aspects of this practice. This article represents the work of the authors and does not represent American Academy of Pediatrics policy.
在过去的 5 年中，剩余新生儿筛查干血斑标本的储存和使用引发了重大争议，主要是因为公众对这些活动缺乏父母的了解和同意。各州处理这些标本的政策差异很大，目前几乎没有指导意见来帮助新的州政策制定，以解决项目专业人员、调查人员和公众的关切。本文基于多种数据源，包括公众态度、专业声明、州经验以及多学科学者对伦理、社会、法律和生物医学问题的分析，为州政策提供了指导。本指南将有助于那些希望制定政策的州计划，这些政策是基于对这一实践的关键伦理、法律和社会方面的当代分析。本文代表作者的工作，不代表美国儿科学会的政策。
