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糖尿病预测性基因检测的伦理问题。

Ethical issues of predictive genetic testing for diabetes.

作者信息

Haga Susanne B

机构信息

Institute for Genome Sciences and Policy, Duke University, Durham, North Carolina 27708, USA.

出版信息

J Diabetes Sci Technol. 2009 Jul 1;3(4):781-8. doi: 10.1177/193229680900300427.

DOI:10.1177/193229680900300427
PMID:20144329
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2769962/
Abstract

With the rising number of individuals affected with diabetes and the significant health care costs of treatment, the emphasis on prevention is key to controlling the health burden of this disease. Several genetic and genomic studies have identified genetic variants associated with increased risk to diabetes. As a result, commercial testing is available to predict an individual's genetic risk. Although the clinical benefits of testing have not yet been demonstrated, it is worth considering some of the ethical implications of testing for this common chronic disease. In this article, I discuss several issues that should be considered during the translation of predictive testing for diabetes, including familial implications, improvement of risk communication, implications for behavioral change and health outcomes, the Genetic Information Nondiscrimination Act, direct-to-consumer testing, and appropriate age of testing.

摘要

随着患糖尿病的人数不断增加以及治疗所需的巨额医疗费用,强调预防是控制这种疾病健康负担的关键。多项基因和基因组研究已确定了与糖尿病风险增加相关的基因变异。因此,现在可以进行商业检测来预测个体的遗传风险。尽管检测的临床益处尚未得到证实,但值得考虑针对这种常见慢性病进行检测所涉及的一些伦理问题。在本文中,我将讨论在糖尿病预测性检测的转化过程中应考虑的几个问题,包括对家族的影响、风险沟通的改善、对行为改变和健康结果的影响、《基因信息非歧视法案》、直接面向消费者的检测以及合适的检测年龄。

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本文引用的文献

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Family Communication and Genetic Counseling: The Case of Hereditary Breast and Ovarian Cancer.家庭沟通与遗传咨询:遗传性乳腺癌和卵巢癌案例
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Direct-to-consumer genome scanning services. Also for children?直接面向消费者的基因组扫描服务。也适用于儿童吗?
Nat Rev Genet. 2009 Jan;10(1):8. doi: 10.1038/nrg2501.
6
Civilian and military genetics: nondiscrimination policy in a post-GINA world.民用与军事遗传学:后《遗传信息非歧视法案》时代的非歧视政策
Am J Hum Genet. 2008 Oct;83(4):435-44. doi: 10.1016/j.ajhg.2008.09.003.
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Screening for hemochromatosis and iron overload: satisfaction with results notification and understanding of mailed results in unaffected participants of the HEIRS study.血色素沉着症和铁过载筛查:HEIRS研究中未受影响参与者对结果通知的满意度及对邮寄结果的理解
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The current landscape for direct-to-consumer genetic testing: legal, ethical, and policy issues.面向消费者的直接基因检测的现状:法律、伦理及政策问题。
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The Genetic Information Nondiscrimination Act: why your personal genetics are still vulnerable to discrimination.《基因信息非歧视法案》:为何你的个人基因仍易遭受歧视。
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