The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies

IF 1.3 4区 医学 Q4 BIOTECHNOLOGY & APPLIED MICROBIOLOGY New Genetics and Society Pub Date : 2021-10-02 DOI:10.1080/14636778.2021.1997576
Terese Knoppers, Elisabeth Beauchamp, K. Dewar, S. Kimmins, G. Bourque, Y. Joly, C. Dupras
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引用次数: 4

Abstract

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.
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我们生活的组学:直接面向消费者的表观遗传和微生物检测公司的实践和政策
在过去的几十年里,人们对直接面向消费者的基因检测的伦理、法律和社会影响给予了很多关注,但新形式的消费者组学的兴起却在很大程度上躲过了审查。本文分析了5家表观遗传学检测公司和7家微生物学检测公司的产品描述、促销信息、服务条款和隐私政策。这种在线测试的出现代表了消费者组学的一个重大转变,从关注遗传分子的基因测试,到对个人生活信息的更广泛兴趣,如实际和生物年龄、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,并考虑到这一转变,我们确定了新公司当前实践和政策中的局限性、差距和不一致之处。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的消费者组学的必要的第一步。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
New Genetics and Society
New Genetics and Society 生物-生物工程与应用微生物
CiteScore
4.30
自引率
16.70%
发文量
19
审稿时长
>12 weeks
期刊介绍: New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which: -Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences; -Publishes theoretical and empirical contributions reflecting its multi-faceted development; -Provides an international platform for critical reflection and debate; -Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences. New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.
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