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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.

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。

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本文引用的文献

1
Letting the genome out of the bottle--will we get our wish?
N Engl J Med. 2008 Jan 10;358(2):105-7. doi: 10.1056/NEJMp0708162.
2
Breakthrough of the year. It's all about me.
Science. 2007 Dec 21;318(5858):1843. doi: 10.1126/science.318.5858.1843.
3
Research ethics and the challenge of whole-genome sequencing.
Nat Rev Genet. 2008 Feb;9(2):152-6. doi: 10.1038/nrg2302.
5
DNA sequencing: bench to bedside and beyond.
Nucleic Acids Res. 2007;35(18):6227-37. doi: 10.1093/nar/gkm688. Epub 2007 Sep 12.
6
Advocacy groups as research organizations: the PXE International example.
Nat Rev Genet. 2007 Feb;8(2):157-64. doi: 10.1038/nrg1991.
7
Whole-genome re-sequencing.
Curr Opin Genet Dev. 2006 Dec;16(6):545-52. doi: 10.1016/j.gde.2006.10.009. Epub 2006 Oct 18.
8
Genomics. On your mark. Get set. Sequence!
Science. 2006 Oct 13;314(5797):232. doi: 10.1126/science.314.5797.232.
9
The personal genome project.
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.
Am J Med Genet A. 2006 May 15;140(10):1033-40. doi: 10.1002/ajmg.a.31195.

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