Haga Susanne B
Institute for Genome Sciences and Policy, Sanford School of Public Policy, Duke University, Durham, North Carolina 27708, USA.
Genet Test Mol Biomarkers. 2010 Oct;14(5):587-92. doi: 10.1089/gtmb.2010.0010. Epub 2010 Sep 21.
In recent years, the storage and use of residual newborn screening (NBS) samples has gained attention. To inform ongoing policy discussions, this article provides an update of previous work on new policies, educational materials, and parental options regarding the storage and use of residual NBS samples. A review of state NBS Web sites was conducted for information related to the storage and use of residual NBS samples in January 2010. In addition, a review of current statutes and bills introduced between 2005 and 2009 regarding storage and/or use of residual NBS samples was conducted. Fourteen states currently provide information about the storage and/or use of residual NBS samples. Nine states provide parents the option to request destruction of the residual NBS sample after the required storage period or the option to exclude the sample for research uses. In the coming years, it is anticipated that more states will consider policies to address parental concerns about the storage and use of residual NBS samples. Development of new policies regarding storage and use of residual NBS samples will require careful consideration of impact on NBS programs, parent and provider educational materials, and respect for parents among other issues.
近年来，新生儿筛查（NBS）剩余样本的储存和使用受到了关注。为了为正在进行的政策讨论提供信息，本文更新了之前关于新政策、教育材料以及父母在NBS剩余样本储存和使用方面选择的相关工作。2010年1月，对各州NBS网站进行了审查，以获取与NBS剩余样本储存和使用相关的信息。此外，还对2005年至2009年间出台的有关NBS剩余样本储存和/或使用的现行法规和法案进行了审查。目前有14个州提供了关于NBS剩余样本储存和/或使用的信息。9个州为父母提供了在规定储存期后要求销毁NBS剩余样本的选项，或者将样本排除用于研究的选项。在未来几年，预计会有更多的州考虑制定政策，以解决父母对NBS剩余样本储存和使用的担忧。制定关于NBS剩余样本储存和使用的新政策需要仔细考虑对NBS项目、父母和提供者教育材料的影响，以及对父母的尊重等其他问题。
