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Two cheers for GINA?GINA 值得两声喝彩吗?
Genome Med. 2009 Jan 20;1(1):6. doi: 10.1186/gm6.
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GINA at 10 years: the battle over 'genetic information' continues in court.《哮喘防治全球创议》发布10年之际:关于“基因信息”的争论仍在法庭上继续。
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Genetic testing and insurance implications: Surveying the US general population about discrimination concerns and knowledge of the Genetic Information Nondiscrimination Act (GINA).基因检测与保险影响:就歧视担忧及《基因信息非歧视法案》(GINA)的了解情况对美国普通民众进行调查。
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The persistent lack of knowledge and misunderstanding of the Genetic Information Nondiscrimination Act (GINA) more than a decade after passage.超过十年来,人们对《遗传信息非歧视法案》(GINA)一直缺乏了解和误解。
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9
Ancestry Testing and the Practice of Genetic Counseling.血统检测与遗传咨询实践
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10
Biobanking, consent, and certificates of confidentiality: does the ANPRM muddy the water?生物库、同意书和保密证书:ANPRM 是否混淆了问题?
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本文引用的文献

1
The Genetic Information Nondiscrimination Act--a half-step toward risk sharing.《基因信息非歧视法案》——迈向风险共担的半步。
N Engl J Med. 2008 Jul 24;359(4):335-7. doi: 10.1056/NEJMp0804352.
2
European practices of genetic information and insurance: lessons for the Genetic Information Nondiscrimination Act.欧洲的基因信息与保险实践:对《基因信息非歧视法案》的启示
JAMA. 2008 Jul 16;300(3):326-7. doi: 10.1001/jama.2008.62.
3
Keeping pace with the times--the Genetic Information Nondiscrimination Act of 2008.与时俱进——2008年《遗传信息非歧视法案》
N Engl J Med. 2008 Jun 19;358(25):2661-3. doi: 10.1056/NEJMp0803964.
4
Genetic exceptionalism and legislative pragmatism.基因例外论与立法实用主义。
J Law Med Ethics. 2007 Summer;35(2 Suppl):59-65. doi: 10.1111/j.1748-720X.2007.00154.x.
5
Genetic testing and the future of disability insurance: ethics, law & policy.基因检测与伤残保险的未来:伦理、法律与政策
J Law Med Ethics. 2007 Summer;35(2 Suppl):6-32. doi: 10.1111/j.1748-720X.2007.00148.x.
6
Prohibiting genetic discrimination.禁止基因歧视。
N Engl J Med. 2007 May 17;356(20):2021-3. doi: 10.1056/NEJMp078033.
7
Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients.结直肠癌患者高危亲属对基因歧视的认知
Genet Med. 2004 Nov-Dec;6(6):510-6. doi: 10.1097/01.gim.0000144013.96456.6c.
8
Genetic information and testing in insurance and employment: technical, social and ethical issues.保险与就业中的遗传信息及检测:技术、社会与伦理问题
Eur J Hum Genet. 2003 Dec;11 Suppl 2:S123-42. doi: 10.1038/sj.ejhg.5201117.
9
Genetic discrimination: time to act.基因歧视:是时候采取行动了。
Science. 2003 Oct 31;302(5646):745. doi: 10.1126/science.302.5646.745.
10
Ethical, legal, and social implications of genomic medicine.基因组医学的伦理、法律和社会影响。
N Engl J Med. 2003 Aug 7;349(6):562-9. doi: 10.1056/NEJMra012577.

GINA 值得两声喝彩吗?

Two cheers for GINA?

机构信息

Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030, USA.

出版信息

Genome Med. 2009 Jan 20;1(1):6. doi: 10.1186/gm6.

DOI:10.1186/gm6
PMID:19348693
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2651591/
Abstract

The Genetic Information Nondiscrimination Act of 2008 (GINA) was recently enacted in the United States. Its supporters have applauded the passage of GINA, and they hope that it will alleviate public fear about genetic discrimination and facilitate genetic testing and participation in genetic research. Critics worry that GINA does not provide adequate protection because it fails to address discrimination on the basis of non-genetic health-related information, and it only regulates the use of genetic information in health insurance and employment. Despite these limitations, GINA represents a major step forward in US policy. Additional research is needed to assess the impact of GINA on industry practice and public opinion. In the mean time, education about GINA and its limitations can help individuals make more informed decisions about genetic testing and participation in genetic research.

摘要

2008 年美国颁布了《遗传信息非歧视法案》(GINA)。该法案的支持者称赞其通过,并希望它能缓解公众对基因歧视的担忧,促进基因检测和参与基因研究。批评者则担心 GINA 提供的保护不够充分,因为它没有解决非遗传健康相关信息基础上的歧视问题,而且仅规范了在健康保险和就业中使用基因信息。尽管存在这些局限性,GINA 仍是美国政策的重大进步。还需要进一步的研究来评估 GINA 对行业实践和公众意见的影响。在此期间,对 GINA 及其局限性的教育可以帮助个人更明智地做出关于基因检测和参与基因研究的决策。