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Protecting privacy in the postgenomic era: Ensuring responsible data governance by direct-to-consumer companies engaging with epigenetics, microbiomics and integrative multi-omics

Organization

Centre of Genomics and Policy (CGP), McGill University

Published

2020

Project Leader(s)

Yann Joly and Charles Dupras

Summary

Over the past decades, studies have raised privacy concerns pertaining to genetic testing services offered directly to the public online by private companies. More recently, the industry has expanded to include not only genetic tests, but also epigenetic and microbiomic tests. This study explores issues related to the protection of consumer privacy in this new context.

In contrast to genetic tests, which typically provide information about a person's inherited biology, epigenetic and microbiomic tests may also provide information about a person's past and current exposures or lifestyle. This is expected to open a new window onto the lives of consumers, and thus raise novel privacy concerns. Importantly, the current focus of ethical guidelines and legislation on genetics may impede proper assessment of privacy and discrimination risks inherent in the development and commercialization of new types of biological tests.

In this Report, researchers present the results of an in-depth analysis of the websites of five direct-to-consumer epigenetic testing companies and seven direct-to-consumer microbiomic testing companies. The researchers explore their promotional messages, product description, privacy policies, and terms of services. Using the 10 principles of the PIPEDA Self-Assessment Tool developed by the Office of the Privacy Commissioner of Canada (OPC), they identify gaps and limitations in the current practices and policy documents of these emerging companies. They point to a lack of clarity, and challenges related to accessing provisions relevant to the protection of consumers' privacy.

The researchers also highlight the fact that, in its current form, Canada's Genetic Non-Discrimination Act (S.C. 2017, c. 3) may not apply to the (mis)use of individual epigenetic or microbiomic information by third parties. In this context, they call for greater consistency, transparency, and accountability on the part of direct-to-consumer epigenetic and microbiomic testing companies.

Project deliverables are available in the following language(s):

The project will be posted on the organization’s website by the end of summer 2020.

OPC Funded Project

This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.

Contact Information

Yann Joly or Charles Dupras
Centre of Genomics and Policy (CGP), McGill University
740 avenue Docteur Penfield, suite 5200
Montréal (QC), H3A 0G1, Canada

Yann Joly:

Charles Dupras:

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