Privacy Risks of Direct-to-Consumer Genetic Testing

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Organization

University of Guelph

Published

2015

Project Leader(s)

Kieran O’Doherty, Associate Professor

Emily Christofides, Postdoctoral Researcher

Summary

This study explores the way in which Direct-to-Consumer Genetic Testing (DTCGT) companies communicate privacy risk information to customers and how consumers understand that information.

The researchers first conducted an analysis of DTCGT company websites to determine what information they provide to consumers on the treatment of their personal information and the risks of DTCGT. Overall, the researchers found that DTCGT companies provide a wide range of tests related to health, relationship and paternity, ancestry and genealogy, personality traits and talents, and other test types.  However, up to half the company sites had no privacy policies posted on them, and many of those that did addressed only aspects related to using their website.  Many sites provided no information about what is done with biological samples and genetic information after testing.

The researchers also administered an online survey that sought feedback from DTCGT customers and people who had considered purchasing genetic testing services. They found that learning more about health and family history were the main reasons for purchasing or considering purchasing a genetic test, and that key risks identified by consumers included privacy, as well as legitimacy of tests, legitimacy of the companies providing the tests, and apprehension about the results.  Nearly half of survey participants reported that they had read company privacy policies prior to purchasing a test or service, and the most expected that companies would only share the results of their tests with them, destroying their genetic samples after testing.

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

English

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

50 Stone Road East
Guelph, Ontario
Canada
N1G 2W1

Website: http://www.uoguelph.ca/
Tel: (519) 824-4120

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