New Genetics and Society (Oct 2021)

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

  • Terese Knoppers,
  • Elisabeth Beauchamp,
  • Ken Dewar,
  • Sarah Kimmins,
  • Guillaume Bourque,
  • Yann Joly,
  • Charles Dupras

DOI
https://doi.org/10.1080/14636778.2021.1997576
Journal volume & issue
Vol. 40, no. 4
pp. 541 – 569

Abstract

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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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