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新生儿全基因组测序(WGS)的伦理和心理社会问题。

Ethical and Psychosocial Issues in Whole Genome Sequencing (WGS) for Newborns.

机构信息

Bioethics Center, Children's Mercy Hospital and University of Missouri - Kansas City, Kansas City, Missouri

出版信息

Pediatrics. 2019 Jan;143(Suppl 1):S1-S5. doi: 10.1542/peds.2018-1099B.

DOI:10.1542/peds.2018-1099B
PMID:30600264
Abstract

In this article, I review some of the ethical issues that have arisen in the past when genetic testing has been done in newborns. I then suggest how whole genome sequencing may raise a new set of issues. Finally, I introduce a series of other articles in which the authors address different controversies that arise when whole genome sequencing is used in the newborn period.

摘要

在本文中,我回顾了过去在对新生儿进行基因检测时出现的一些伦理问题。然后,我提出了全基因组测序可能会引发的一系列新问题。最后,我介绍了一系列其他文章,作者在这些文章中讨论了在新生儿期使用全基因组测序时出现的不同争议。

相似文献

1
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。
Pediatrics. 2019 Jan;143(Suppl 1):S1-S5. doi: 10.1542/peds.2018-1099B.
2
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.
3
Sequencing projects will screen 200,000 newborns for disease.测序项目将对20万名新生儿进行疾病筛查。
Science. 2022 Dec 16;378(6625):1159. doi: 10.1126/science.adg2858. Epub 2022 Dec 15.
4
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?
BMJ. 2017 Jul 20;358:j3294. doi: 10.1136/bmj.j3294.
5
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。
Hastings Cent Rep. 2018 Jul;48 Suppl 2(Suppl 2):S18-S19. doi: 10.1002/hast.878.
6
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。
Hastings Cent Rep. 2018 Jul;48 Suppl 2:S43-S44. doi: 10.1002/hast.885.
7
Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.对新生儿进行基因测序:呼吁谨慎使用基因组技术。
Hastings Cent Rep. 2018 Jul;48 Suppl 2(Suppl 2):S2-S6. doi: 10.1002/hast.874.
8
Genetic profiling of newborns: ethical and social issues.新生儿基因图谱分析:伦理与社会问题
Nat Rev Genet. 2006 Jan;7(1):67-71. doi: 10.1038/nrg1745.
9
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。
Hastings Cent Rep. 2018 Jul;48 Suppl 2:S12-S13. doi: 10.1002/hast.876.
10
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。
Hastings Cent Rep. 2018 Jul;48 Suppl 2:S29-S31. doi: 10.1002/hast.881.

引用本文的文献

1
A systematic framework for selecting gene-condition pairs for inclusion in newborn sequencing panels: Early Check implementation.用于选择纳入新生儿测序面板的基因-疾病对的系统框架:早期检查实施
Genet Med. 2024 Dec;26(12):101290. doi: 10.1016/j.gim.2024.101290. Epub 2024 Oct 5.
2
From newborn screening to genomic medicine: challenges and suggestions on how to incorporate genomic newborn screening in public health programs.从新生儿筛查到基因组医学:关于如何将基因组新生儿筛查纳入公共卫生项目的挑战与建议。
Med Genet. 2022 May 7;34(1):13-20. doi: 10.1515/medgen-2022-2113. eCollection 2022 Apr.
3
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.
4
Whole genome sequencing in clinical practice.临床实践中的全基因组测序。
BMC Med Genomics. 2024 Jan 29;17(1):39. doi: 10.1186/s12920-024-01795-w.
5
Receiving results of uncertain clinical relevance from population genetic screening: systematic review & meta-synthesis of qualitative research.从群体遗传筛查中获得不确定临床相关性的结果:定性研究的系统评价和元综合。
Eur J Hum Genet. 2022 May;30(5):520-531. doi: 10.1038/s41431-022-01054-5. Epub 2022 Mar 8.
6
Addressing ethical and laboratory challenges for initiation of a rapid whole genome sequencing program.应对启动快速全基因组测序计划所面临的伦理和实验室挑战。
J Clin Transl Sci. 2021 Aug 9;5(1):e177. doi: 10.1017/cts.2021.833. eCollection 2021.
7
Rapid genomic testing for critically ill children: time to become standard of care?危重症儿童的快速基因组检测:是时候成为标准治疗了吗?
Eur J Hum Genet. 2022 Feb;30(2):142-149. doi: 10.1038/s41431-021-00990-y. Epub 2021 Nov 8.
8
Genetic screening techniques and diseases for neonatal genetic diseases.新生儿遗传疾病的基因筛查技术和疾病。
Zhejiang Da Xue Xue Bao Yi Xue Ban. 2021 Aug 25;50(4):429-435. doi: 10.3724/zdxbyxb-2021-0288.
9
The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.儿科全基因组测序中的伦理问题全景:系统定性综述。
BMC Pediatr. 2021 Sep 6;21(1):387. doi: 10.1186/s12887-021-02830-w.
10
Next-Generation Sequencing in Newborn Screening: A Review of Current State.新生儿筛查中的下一代测序:现状综述
Front Genet. 2021 May 26;12:662254. doi: 10.3389/fgene.2021.662254. eCollection 2021.