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首页> 外文期刊>American journal of bioethics >Direct-to-Consumer Personal Genome Testing: The Problem Is Not Ignorance—It Is Market Failure
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Direct-to-Consumer Personal Genome Testing: The Problem Is Not Ignorance—It Is Market Failure

机译:直接面向消费者的个人基因组测试:问题不是无知,而是市场失灵

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Direct-to-consumer personal genome testing presents a major challenge to healthcare systems because it distorts and confuses notions of diagnosis and screening and capitalizes on ignorance about causation for commercial ends. The reach of the Internet and the impact of globalization make this a global problem. In meeting this challenge we should be wary of calls to improve public and professional understanding of genetics, as they assume that the problem is ignorance so the solution must be education (the so-called 'Deficit Model'). We suggest that the problem is ultimately one of how to regulate testing in a poorly regulated free-market system where profits can be made in ways that generate costs for individual consumers and health systems. The global financial crisis has highlighted the social risks created by such systems, and the bioethics community should adopt a perspective that is wide enough to see the parallels in healthcare. There is scant empirical research into direct-to consumer personal genome testing (DTC-PGT), so we welcome the findings reported here (McGuire et al. 2009), notwithstanding the methodological limitations of the survey. The findings suggest that among people who build social networks online, a substantial proportion may consider using PGT for the purpose of gaining knowledge about disease in their family, and many would consider the results to somehow constitute a medical diagnosis, and would seek physician advice. If these findings are true, should we be concerned? And if so, on what grounds?
机译:直接面向消费者的个人基因组测试对医疗保健系统提出了一项重大挑战,因为它扭曲并混淆了诊断和筛查的概念,并且利用了对商业目的因果关系的无知。互联网的覆盖范围和全球化的影响使这一问题成为全球性问题。在应对这一挑战时,我们应该警惕呼吁提高公众和专业人士对遗传学的理解,因为他们认为问题是无知,因此解决方案必须是教育(所谓的“反抗模式”)。我们建议该问题最终是如何在监管不力的自由市场系统中规范测试的问题之一,在该系统中,可以通过为个人消费者和卫生系统产生成本的方式来获利。全球金融危机凸显了此类系统所带来的社会风险,生物伦理学界应采取足够广泛的视角来审视医疗领域的相似之处。对直接针对消费者的个人基因组测试(DTC-PGT)的经验研究很少,因此,尽管调查方法存在局限性,但我们欢迎此处报告的发现(McGuire等,2009)。研究结果表明,在在线建立社交网络的人们中,很大一部分人可能考虑使用PGT来获得有关家庭疾病的知识,许多人会考虑将结果以某种方式构成医学诊断,并寻求医生的建议。如果这些发现是正确的,我们应该关注吗?如果是这样,基于什么理由?

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