Analysis of Privacy Policies and Practices of Direct-to-Consumer Genetic Testing Companies: Private Sector Databanks and Privacy Protection Norms
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University of Alberta, Health Law Institute
This report discusses privacy issues in the context of direct-to-consumer (DTC) sale of genetic testing services. A growing number of companies, mainly U.S.-based, sell genetic tests directly to consumers. To provide this service, the companies collect biological samples and personal information from clients, raising questions about the use, disclosure, retention, and security of these materials.
The researchers analyzed the privacy policies of 32 DTC genetic testing companies against the fair information principles developed by the Canadian Standards Association in the Model Code for the Protection of Personal Information and incorporated into the federal Personal Information Protection and Electronic Documents Act. These ten principles are: accountability; identifying purposes; consent; limiting collection; limiting use, disclosure and retention; accuracy; safeguards; openness; individual access; and challenging compliance.
This report concludes with a list of privacy-related questions the researchers recommend consumers should consider before buying genetic tests over the Internet. Consumers who seek answers to the questions—through careful review of company privacy policies and direct contact with companies—will be able to make a more informed choice about sending their personal information and genetic samples to a company.
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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.
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