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Promissory accounts of personalisation in the commercialisation of genomic knowledge

机译：基因组知识商业化中的个性化承诺书

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As part of personalised medicine emerging from the human genomics revolution, many websites now offer direct-to-consumer genetic testing. Here, we examine three personal genomics companies - Navigenics, deCODEme and 23andMe - each of which represents contrasting registers of personalisation'. We identify three distinctive registers in these websites: a paternalistic (medical) register; a translational (scientific) register and a democratic (consumerist) register. We explore in detail the rhetorical and discourse devices employed in these websites to assess how personalised healthcare is promised to the public. Promising information that will empower prevention of common complex diseases and ensure better quality of life is conflated with promising greater access to personal information. The presence and absence of scientific legitimacy is related to concerns about accuracy and validity on the one side, and fears of paternalism and elitism on the other. Nevertheless, a common strategy uniting these different styles of personalisation is consumer empowerment. Finally, we consider the tension between the drive of translational medicine to make human genomic research practically relevant, and the intrinsic uncertainties of scientific research and show how, in the commercial domain, future risks are transformed into discourses of promise by concealing these uncertainties.
机译：作为人类基因组学革命兴起的个性化医学的一部分，许多网站现在都提供直接面向消费者的基因测试。在这里，我们研究了三个个人基因组学公司-Navigenics，deCODEme和23andMe，每个公司都代表着个性化的对比记录。在这些网站上，我们确定了三种独特的注册方式：家长式（医疗）注册方式;翻译（科学）名册和民主（消费者）名册。我们将详细探讨这些网站中使用的修辞和话语设备，以评估如何向公众承诺个性化医疗保健。有前途的信息将有助于预防常见的复杂疾病，并确保更好的生活质量，并有望改善对个人信息的访问。科学合法性的存在与否一方面与对准确性和有效性的担忧有关，另一方面与对家长制和精英主义的担忧有关。尽管如此，将这些不同风格的个性化结合在一起的共同策略是增强消费者能力。最后，我们考虑了转化医学使人类基因组研究切实可行的驱动力与科学研究的内在不确定性之间的张力，并展示了如何在商业领域中通过隐藏这些不确定性将未来风险转化为希望的话语。

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