研究成果：保存新生儿血样。
Research results: preserving newborn blood samples.
机构信息
Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, USA.
出版信息
Sci Transl Med. 2012 Nov 7;4(159):159cm12. doi: 10.1126/scitranslmed.3004474.
Abstract
Retention and use, without explicit parental permission, of residual dried blood samples from newborn screening has generated public controversy over concerns about violations of family privacy rights and loss of parental autonomy. The public debate about this issue has included little discussion about the destruction of a potentially valuable public resource that can be used for research that may yield improvements in public health. The research community must advocate for policies and infrastructure that promote retention of residual dried blood samples and their use in biomedical research.
摘要
保留和使用新生儿筛查中剩余的干血斑样本而未经明确的父母许可，引起了公众对侵犯家庭隐私权和丧失父母自主权的担忧。关于这个问题的公众讨论几乎没有涉及到破坏潜在有价值的公共资源的问题，这些资源可用于研究，从而可能改善公共卫生。研究界必须倡导促进保留和在生物医学研究中使用剩余干血斑样本的政策和基础设施。
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本文引用的文献
1
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Antiviral Res. 2012 Mar;93(3):309-21. doi: 10.1016/j.antiviral.2011.12.011. Epub 2012 Jan 5.
2
Feasibility of neonatal dried blood spot retrieval amid evolving state policies (2009-2010): a Children's Oncology Group study.
Paediatr Perinat Epidemiol. 2011 Nov;25(6):549-58. doi: 10.1111/j.1365-3016.2011.01228.x. Epub 2011 Aug 10.
3
Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening.
Genet Med. 2011 Jul;13(7):621-4. doi: 10.1097/GIM.0b013e3182147639.
4
Ten great public health achievements--United States, 2001-2010.
MMWR Morb Mortal Wkly Rep. 2011 May 20;60(19):619-23.
5
State laws regarding the retention and use of residual newborn screening blood samples.
Pediatrics. 2011 Apr;127(4):703-12. doi: 10.1542/peds.2010-1468. Epub 2011 Mar 28.
6
Storage and use of residual dried blood spots from state newborn screening programs.
J Pediatr. 2006 May;148(5):618-22. doi: 10.1016/j.jpeds.2005.12.053.
7
Molecular biomarkers for the study of childhood leukemia.
Toxicol Appl Pharmacol. 2005 Aug 7;206(2):237-45. doi: 10.1016/j.taap.2004.11.026.
8
Serving the family from birth to the medical home. Newborn screening: a blueprint for the future - a call for a national agenda on state newborn screening programs.
Pediatrics. 2000 Aug;106(2 Pt 2):389-422.
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