Direct to consumer genetic testing and privacy concerns

Direct to consumer genetic testing (DTCGT), or online genetic testing, allows people to order genetic tests directly from a company to learn more about their ancestry, asses a wide array of potential diseases and health issues, or determine the chances of their children inheriting a genetic disorder. As a result, people now have access to health relevant genetic information without the aid of a physician, though the quality of this health information is largely unregulated. While much of the research on DTCGT focuses on the health risks and healthcare burden of such practices, little research has examined the privacy risks associated with entrusting private companies with one’s genetic material. Research that explores the ethical and privacy implications of biobanks tends to focus on publicly funded biobanks, many of which are embedded in the existing health system. Discussions have only just begun to turn to the additional privacy concerns that arise from private companies having access to, storing, and conducting research with genetic samples and information provided by their customers. 

 In order to fill this important gap in the literature regarding knowledge of the privacy risks of engaging with private companies for genetic testing, we conducted a review of the websites of DTCGT companies to determine what information they communicate about the way they handle people's private information. We then surveyed customers to learn more about their experiences with DTCGT and to see how they interpret the privacy information. We also provided recommendations of best practices for DTCGT companies in presenting privacy information to consumers, offered some considerations for regulation of DTCGT companies, and created a guide to consumers in considering the purchase of a DTC genetic test. To read more about this project and the findings, please download our final report, delivered to the Office of the Privacy Commissioner of Canada, who funded this project under their Research Contributions Program.

For more information, please contact Emily (echristo@uoguelph.ca) or call 519-824-4120 x 52104

 

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PDF icon DTCGT_FinalReport.pdf781.57 KB