Preslan Elicia D, Mathews Debra J H
Virginia Commonwealth University, Richmond, VA 23298, USA.
J Empir Res Hum Res Ethics. 2013 Jul;8(3):22-33. doi: 10.1525/jer.2013.8.3.22.
In contrast to prior research, which has focused mainly on legislative content, this study aimed to characterize the current governance structures and procedures used by state newborn screening programs in the United States regarding the research use of residual dried blood spots. Content analysis was performed on newborn screening laws, program policies, survey responses, and online material, and was compared to information from two neonatal biobanks. Important differences between newborn screening programs and neonatal biobanks included the types of permissible research with blood spots, the evaluation criteria used for research requests, and characteristics of the research proposal reviewers. These findings can inform ongoing policy conversations with respect to the governance and use of residual dried blood spots.
与以往主要关注立法内容的研究不同，本研究旨在描述美国各州新生儿筛查项目在残留干血斑研究用途方面目前使用的治理结构和程序。对新生儿筛查法律、项目政策、调查回复和在线材料进行了内容分析，并与来自两个新生儿生物样本库的信息进行了比较。新生儿筛查项目和新生儿生物样本库之间的重要差异包括血斑允许的研究类型、研究申请的评估标准以及研究提案评审人员的特征。这些发现可为有关残留干血斑治理和使用的正在进行的政策讨论提供参考。
