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Keeping data alive: talking DTC genetic testing

机译：保持数据存活：谈论DTC基因测试

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Direct-to-consumer (DTC) genetic testing has been discussed and critiqued from perspectives that include biomedical, commercial, ethical, legal, regulatory, and participatory stances. This study adds a perspective that emphasizes the 'liveliness of data' and treats 23andMe genetic tests as part of an expanding self-tracking market that shapes communication, social life, and identities. In demonstrating how 'gene talk' aids and speeds the circulation of findings based on personal data, the discussion cast light on how personal data gain value in people's lives, thereby enhancing their readiness to position themselves as data subjects. Users are offered a data-enhanced existence, a 'lifeworld inc.', in which new kinds of ontological horizons are promoted by technical developments that produce numbers and calculable coordinates for descriptive regimes. Arguing that debates on DTC genetic testing and uses of personal data benefit from a more thorough analysis both of translations of genetic knowledge and emerging data practices, the aim is to critically address the active work by users that keeps genetic data alive, including the emotional longings and practical capabilities that people have in terms of genetic knowledge. Through a more comprehensive framework, recognizing the lively nature of genetic data, we can reveal how genetic testing services promote knowledge formation that mixes intimate and larger scale social and economic contexts.
机译：已经从包括生物医学，商业，道德，法律，法规和参与性立场在内的角度讨论并批评了直接面向消费者（DTC）的基因测试。这项研究增加了一个强调“数据的生动性”的观点，并将23andMe基因测试视为正在扩展的自我跟踪市场的一部分，该市场塑造了沟通，社交生活和身份。在演示“基因对话”如何帮助并加速基于个人数据的发现的传播时，讨论着重介绍了个人数据如何在人们的生活中获得价值，从而增强了他们将自己定位为数据主体的意愿。为用户提供了一个数据增强的生存空间，即“ lifeworld inc。”，其中通过技术发展促进了新型的本体论视野，这些技术发展为描述性体制提供了数字和可计算的坐标。争论关于DTC基因测试和个人数据使用的辩论得益于对遗传知识翻译和新兴数据实践的更透彻分析，其目的是批判性地解决用户保持遗传数据存活的积极工作，包括情感上的渴望和人们在遗传知识方面的实践能力。通过更全面的框架，认识到遗传数据的活泼性质，我们可以揭示出基因检测服务如何促进知识的形成，这种知识形成了亲密的和更大规模的社会和经济环境。

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