Analysis of Privacy Policies and Practices of Direct-to-Consumer Genetic Testing Companies: Private Sector Databanks and Privacy Protection Norms

This page has been archived on the Web

Information identified as archived is provided for reference, research or recordkeeping purposes. It is not subject to the Government of Canada Web Standards and has not been altered or updated since it was archived. Please contact us to request a format other than those available.

Organization

University of Alberta, Health Law Institute

Published

2010

Summary

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.

There is wide variation in the extent to which DTC genetic testing companies address protection of personal information and biological samples. Of the 32 company websites the researchers studied, 20 provide a privacy policy on their websites. Some focus on internet use (e.g. how the website tracks visitors) and some briefly address handling of samples and/or results. Seven of the 20 companies have more comprehensive policies that explain how the company collects and uses information via its website and how samples and results are handled.

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.

This document is available in the following language(s):

English only

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

Health Law Institute
Law Centre, University of Alberta
Edmonton AB T6G 2H5

Email: hliadmin@ualberta.ca
Website: http://www.hli.ualberta.ca/
Tel: (780) 248-1175
Fax: (780) 492-9575

Date modified: