Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis

Health-Related Direct-to-Consumer Genetic Tests: A Public Health Assessment and Analysis of Practices Related to Internet-Based Tests for Risk of Thrombosis
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DOI:
10.1159/000176794
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发表时间:
2009-01-01
影响因子:
1.7
通讯作者:
Khoury, M. J.
Khoury, M. J.
中科院分区:
医学4区
文献类型:
--
作者:
Goddard, K. A. B.;Robitaille, J.;Khoury, M. J.

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背景:近年来,人们越来越关注直接面向消费者(DTC)的基因检测(即不涉及卫生保健提供者的基因检测的销售和使用)。许多专业组织制定了这方面的政策。然而,很少有系统的证据可以为公共政策提供有关这些测试的信息。方法:我们进行了系统的搜索,以确定不涉及卫生保健提供者的DTC出售的基因检测。我们使用来自多个来源的标准和一组最小的关键实践来评估提供血栓形成风险的DTC基因测试的公司的做法。结果:我们确定了目前在27个网站上出售的84例与健康相关的DTC基因检测;最常见的是药物基因组学(12)、血栓形成风险(10)和营养基因组学(10)。对于血栓形成风险的DTC基因测试,我们发现对建议的依从性较低。网上信息往往不完整,与专业建议的一致性较低。结论:我们的研究结果表明,与健康相关的DTC基因检测的可用性迅速增长,并强调需要改善DTC基因检测的提供。这项研究的一个主要含义是,科学界和医学界需要制定一致的建议,以增加其影响。版权所有2008 S. Karger AG,巴塞尔
Background: Recent years have seen increased concern about direct-to-consumer (DTC) genetic testing (i.e., the sale and use of genetic tests without involving a health care provider). Numerous professional organizations have developed policies in this area. However, little systematic evidence exists to inform public policy about these tests. Methods: We conducted a systematic search to identify genetic tests that are sold DTC without involving a health care provider. We evaluated the practices of companies offering DTC genetic tests for risk of thrombosis using criteria from multiple sources and a minimal set of key practices. Results: We identified 84 instances of currently available health-related DTC genetic tests sold on 27 Web sites; the most common were for pharmacogenomics (12), risk of thrombosis (10), and nutrigenomics (10). For the DTC genetic tests for risk of thrombosis, we found low adherence to recommendations. Online information was frequently incomplete and had low agreement with professional recommendations. Conclusion: Our findings document the rapid growth in the availability of health-related DTC genetic tests and highlight the need to improve the delivery of DTC genetic tests. A major implication of this study is the need for the scientific and medical community to develop Consistent recommendations to increase their impact. Copyright (C) 2008 S. Karger AG, Basel