Terese Knoppers, Elisabeth Beauchamp, K. Dewar, S. Kimmins, G. Bourque, Y. Joly, C. Dupras
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The omics of our lives: practices and policies of direct-to-consumer epigenetic and microbiomic testing companies
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.
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.