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危害、炒作与证据:ELSI 研究与政策指导。

Harm, hype and evidence: ELSI research and policy guidance.

机构信息

Health Law and Science Policy Group, University of Alberta, Edmonton, Alberta Canada, T6G 2H5.

Institute for Genome Sciences and Policy, North Building, Duke University, USA Drive, Box 90141 Durham, NC 27708, USA.

出版信息

Genome Med. 2013 Mar 26;5(3):21. doi: 10.1186/gm425. eCollection 2013.

DOI:10.1186/gm425
PMID:23534337
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3707044/
Abstract

There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote than by available evidence. Although a quest for evidence cannot always be allowed to delay policy choice, it seems axiomatic to us that policy options are improved by the incorporation of evidence.

摘要

在与遗传和基因组研究相关的伦理、法律和社会问题(ELSI)方面,已经进行了大量的研究投资。这项研究应该为相关政策的制定提供信息。到目前为止,许多相关政策——如在专利、基因检测和基因歧视等领域——似乎更多地是基于对伤害和传闻的猜测,而不是现有证据。虽然寻求证据不能总是被用来推迟政策选择,但我们认为,将证据纳入政策选择可以提高政策选择的质量,这似乎是不言而喻的。

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本文引用的文献

1
Genetic discrimination and life insurance: a systematic review of the evidence.遗传歧视与寿险:证据的系统回顾。
BMC Med. 2013 Jan 31;11:25. doi: 10.1186/1741-7015-11-25.
2
Genetic discrimination: international perspectives.遗传歧视:国际视角。
Annu Rev Genomics Hum Genet. 2012;13:433-54. doi: 10.1146/annurev-genom-090711-163800. Epub 2012 May 15.
3
Association between health-service use and multiplex genetic testing.医疗服务利用与多重基因检测的关联。
Genet Med. 2012 Oct;14(10):852-9. doi: 10.1038/gim.2012.52. Epub 2012 May 17.
4
Science and the sources of hype.科学与炒作的根源。
Public Health Genomics. 2012;15(3-4):209-17. doi: 10.1159/000336533. Epub 2012 Apr 4.
5
The predictive capacity of personal genome sequencing.个人基因组测序的预测能力。
Sci Transl Med. 2012 May 9;4(133):133ra58. doi: 10.1126/scitranslmed.3003380. Epub 2012 Apr 2.
6
Debunking the myth that whole-genome sequencing infringes thousands of gene patents.揭穿全基因组测序侵犯数千项基因专利这一谬论。
Nat Biotechnol. 2012 Mar 7;30(3):240-4. doi: 10.1038/nbt.2146.
7
Direct to consumer genetic testing: a systematic review of position statements, policies and recommendations.直接面向消费者的基因检测:立场声明、政策和建议的系统评价。
Clin Genet. 2012 Sep;82(3):210-8. doi: 10.1111/j.1399-0004.2012.01863.x. Epub 2012 Apr 8.
8
Legislation on direct-to-consumer genetic testing in seven European countries.七个欧洲国家的直接面向消费者的基因检测立法。
Eur J Hum Genet. 2012 Jul;20(7):715-21. doi: 10.1038/ejhg.2011.278. Epub 2012 Jan 25.
9
Impact of direct-to-consumer predictive genomic testing on risk perception and worry among patients receiving routine care in a preventive health clinic.直接面向消费者的预测性基因检测对预防保健诊所常规护理患者的风险感知和担忧的影响。
Mayo Clin Proc. 2011 Oct;86(10):933-40. doi: 10.4065/mcp.2011.0190.
10
Direct-to-consumer testing: if consumers are not anxious, why are policymakers?直接面向消费者的检测:如果消费者不焦虑,政策制定者为何焦虑?
Hum Genet. 2011 Jul;130(1):23-5. doi: 10.1007/s00439-011-0987-8. Epub 2011 Apr 11.