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新生儿筛查中基因组测序的法律维度。

The Legal Dimensions of Genomic Sequencing in Newborn Screening.

出版信息

Hastings Cent Rep. 2018 Jul;48 Suppl 2:S39-S41. doi: 10.1002/hast.884.

DOI:10.1002/hast.884
PMID:30133728
Abstract

The possible integration of genomic sequencing (including whole-genome and whole-exome sequencing) into the three contexts addressed in this special report-state-mandated screening programs, clinical care, and direct-to-consumer services-raises related but distinct legal issues. This essay will outline the legal issues surrounding the integration of genomic sequencing into state newborn screening programs, parental rights to refuse and access sequencing for their newborns in clinical and direct-to-consumer care, and privacy-related legal issues attending the use of sequencing in newborns.

摘要

基因组测序(包括全基因组和全外显子组测序)可能会被整合到本报告所讨论的三个情境中,即州政府授权的筛查项目、临床护理和直接面向消费者的服务,这引发了相关但又不同的法律问题。本文将概述基因组测序整合到州新生儿筛查项目中所涉及的法律问题、父母在临床和直接面向消费者护理中拒绝和获取其新生儿测序的权利,以及在新生儿中使用测序所涉及的与隐私相关的法律问题。

相似文献

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The Legal Dimensions of Genomic Sequencing in Newborn Screening.新生儿筛查中基因组测序的法律维度。
Hastings Cent Rep. 2018 Jul;48 Suppl 2:S39-S41. doi: 10.1002/hast.884.
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What Genomic Sequencing Can Offer Universal Newborn Screening Programs.基因组测序能为全民新生儿筛查项目带来什么。
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Baby genome screening: paving the way to genetic discrimination?婴儿基因组筛查:为基因歧视铺平道路?
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Commercial Interests, the Technological Imperative, and Advocates: Three Forces Driving Genomic Sequencing in Newborns.商业利益、技术需求与倡导者:推动新生儿基因组测序的三股力量。
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Ethical and Psychosocial Issues in Whole Genome Sequencing (WGS) for Newborns.新生儿全基因组测序(WGS)的伦理和心理社会问题。
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Are Parents Really Obligated to Learn as Much as Possible about Their Children's Genomes?父母真的有义务尽可能多地了解子女的基因组吗?
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Families' Experiences with Newborn Screening: A Critical Source of Evidence.家庭对新生儿筛查的体验:重要的证据来源。
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Eugenics Redux: "Reproductive Benefit" as a Rationale for Newborn Screening.优生学再思考:“生殖获益”作为新生儿筛查的理由。
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Neonatal genetic testing is more than screening.新生儿基因检测不止于筛查。
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A newborn Screening Programme for Inborn errors of metabolism in Galicia: 22 years of evaluation and follow-up.加利西亚地区先天性代谢缺陷新生儿筛查项目:22 年的评估与随访
Orphanet J Rare Dis. 2024 May 17;19(1):202. doi: 10.1186/s13023-024-03204-y.
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[Evaluation and perspective of 20 years of neonatal screening in Galicia. Program results.].[加利西亚地区20年新生儿筛查的评估与展望。项目成果。]
Rev Esp Salud Publica. 2020 Dec 16;94:e202012161.