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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies
New Genetics and Society ( IF 1.8 ) Pub Date : 2021-11-29 , DOI: 10.1080/14636778.2021.1997576
Terese Knoppers 1 , Elisabeth Beauchamp 1 , Ken Dewar 1 , Sarah Kimmins 1 , Guillaume Bourque 1 , Yann Joly 1 , Charles Dupras 1
Affiliation  

While much attention has gone towards ethical, legal, and social implications of direct-to-consumer genetic testing over the past decades, the rise of new forms of consumer omics has largely escaped scrutiny. In this paper, we analyze the product descriptions, promotional messages, terms of service, and privacy policies of five epigenetic and seven microbiomic testing companies. The advent of such tests online represents a significant shift in consumer omics, from a focus on inherited molecules with genetic tests, to broader interest for information about the lives of individuals, such as chronological and biological age, exposures, and lifestyle. Building on previous literature about direct-to-consumer genetic testing, and taking this shift into account, we identify limitations, gaps and inconsistencies in current practices and policies of the new companies. Best practice standards and regulations applicable across different omic sample and data types is a necessary first step in the promotion of responsible consumer omics.



中文翻译:

我们生活的组学:直接面向消费者的表观遗传学和微生物组学测试公司的实践和政策

虽然在过去的几十年里,直接面向消费者的基因检测的伦理、法律和社会影响受到了很多关注,但新形式的消费者组学的兴起在很大程度上逃脱了审查。在本文中,我们分析了五家表观遗传学和七家微生物组学测试公司的产品描述、促销信息、服务条款和隐私政策。此类在线测试的出现代表了消费者组学的重大转变,从关注遗传分子的基因测试,到更广泛地关注个人生活信息,如实足年龄和生物学年龄、暴露和生活方式。基于先前关于直接面向消费者的基因检测的文献,并考虑到这种转变,我们确定了局限性,新公司现行做法和政策的差距和不一致。适用于不同组学样本和数据类型的最佳实践标准和法规是促进负责任消费者组学的必要第一步。

更新日期:2021-12-14
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