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Myths Misconceptions and Myopia: Searching for Clarity in the Debate about the Regulation of Consumer Genetics

机译:神话误解和近视:寻找关于消费者遗传学调控的清晰性

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摘要

The new wave of companies offering genome scans direct-to-consumer (DTC) has prompted commentary from scientists, clinicians, bioethicists and those interested in the ethical, legal and social issues arising from genomics. It has thus brought a far wider range of actors into a longstanding debate about the regulation of genetic tests. However, some of the recent discussion is characterised by misunderstanding of the regulatory landscape, a failure to grasp the lessons of the past and lack of clarity of thought. In this commentary I challenge a series of myths and misconceptions which plague current academic and policy discussion: the conflation of regulation and proscription; the failure to recognise that DTC companies are gatekeepers; the assumption that requiring a medical intermediary for testing is paternalistic; the belief that online services cannot be regulated; the presumption that we must avoid genetic exceptionalism; the idea that policy is lagging behind science or that it is too soon to act; and finally, the view that DTC genetics is a reality we have to adapt to.
机译:提供直接面向消费者的基因组扫描的公司的新潮流促使科学家,临床医生,生物伦理学家以及对基因组学引起的道德,法律和社会问题感兴趣的人发表评论。因此,它已将范围广泛的参与者带入了有关基因测试监管的长期辩论。但是,最近的一些讨论的特征是对监管环境的误解,无法把握过去的教训以及思路不清晰。在这篇评论中,我挑战了一系列神话和误解,这些神话和误解困扰着当前的学术和政策讨论:监管与禁令的融合;没有意识到DTC公司是看门人;假设需要医学中介进行测试是家长式的;认为无法规范在线服务;我们必须避免遗传例外的假设;政策落后于科学或采取行动为时过早的想法;最后,关于DTC遗传学是我们必须适应的现实的观点。

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