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How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study.直接面向消费者的个人基因组检测服务的客户对基因检测结果的理解程度如何?个人基因组学研究影响的结果
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Design, methods, and participant characteristics of the Impact of Personal Genomics (PGen) Study, a prospective cohort study of direct-to-consumer personal genomic testing customers.Impact of Personal Genomics(PGen)研究的设计、方法和参与者特征,这是一项针对直接面向消费者的个人基因组检测客户的前瞻性队列研究。
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Is there a doctor in the house? : The presence of physicians in the direct-to-consumer genetic testing context.家里有医生吗?:直接面向消费者的基因检测环境中医生的存在情况。
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本文引用的文献

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Letting the genome out of the bottle--will we get our wish?让基因组从瓶中释放——我们会如愿以偿吗?
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Breakthrough of the year. It's all about me.
Science. 2007 Dec 21;318(5858):1843. doi: 10.1126/science.318.5858.1843.
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Research ethics and the challenge of whole-genome sequencing.研究伦理与全基因组测序的挑战。
Nat Rev Genet. 2008 Feb;9(2):152-6. doi: 10.1038/nrg2302.
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Pharmacogenomic testing to prevent aminoglycoside-induced hearing loss in cystic fibrosis patients: potential impact on clinical, patient, and economic outcomes.药物基因组学检测预防囊性纤维化患者氨基糖苷类药物所致听力损失:对临床、患者及经济结局的潜在影响
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DNA sequencing: bench to bedside and beyond.DNA测序:从实验室到临床应用及未来发展
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Advocacy groups as research organizations: the PXE International example.作为研究机构的倡导团体:以弹力纤维假黄瘤国际组织为例。
Nat Rev Genet. 2007 Feb;8(2):157-64. doi: 10.1038/nrg1991.
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Whole-genome re-sequencing.全基因组重测序
Curr Opin Genet Dev. 2006 Dec;16(6):545-52. doi: 10.1016/j.gde.2006.10.009. Epub 2006 Oct 18.
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Genomics. On your mark. Get set. Sequence!基因组学。各就各位。预备。测序!
Science. 2006 Oct 13;314(5797):232. doi: 10.1126/science.314.5797.232.
9
The personal genome project.个人基因组计划。
Mol Syst Biol. 2005;1:2005.0030. doi: 10.1038/msb4100040. Epub 2005 Dec 13.
10
Reporting genetic results in research studies: summary and recommendations of an NHLBI working group.研究报告中的基因研究结果:美国国立心肺血液研究所工作组的总结与建议
Am J Med Genet A. 2006 May 15;140(10):1033-40. doi: 10.1002/ajmg.a.31195.

契约式基因组:直接面向消费者的基因检测服务如何助力患者掌握自身DNA。

The contractual genome: how direct-to-consumer genomic services may help patients take ownership of their DNA.

作者信息

Foster Morris W, Sharp Richard R

机构信息

University of Oklahoma, Department of Anthropology, 455 W Lindsey, Rm 505C, Norman, OK 73019, USA, Tel.: +1 405 325 2491;

Department of Bioethics, Cleveland Clinic, Cleveland, OH 44193, USA.

出版信息

Per Med. 2008 Jul 1;5(4):399-404. doi: 10.2217/17410541.5.4.399.

DOI:10.2217/17410541.5.4.399
PMID:24955099
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4061702/
Abstract

The sequencing and genotyping of personal genomes by commercial services outside traditional clinical settings may help to shape the expectations of research subjects and patients regarding control of and responsibility for the information contained in their DNA. A greater sense of individual ownership of personal genomic information could replace overly complex and paternalistic institutional proxies for the protection of personal genotype and sequence data, and also could encourage research participants and patients to become better educated regarding genetic contributors to disease.

摘要

在传统临床环境之外,由商业服务机构对个人基因组进行测序和基因分型,可能有助于塑造研究对象和患者对其DNA中所含信息的控制和责任的期望。个人对个人基因组信息有更强的所有权意识,可能会取代保护个人基因型和序列数据的过于复杂且家长式的机构代理方式,还可能鼓励研究参与者和患者更好地了解疾病的遗传因素。