Prof, Researcher to Study Privacy Risks of Genetic Testing

July 22, 2013 - News Release

A University of Guelph professor and a post-doctoral researcher have received a grant from the Office of the Privacy Commissioner of Canada to study privacy risks of online genetic testing.

Psychology professor Kieran O’Doherty and researcher Emily Christofides received nearly $50,000 — the maximum allowed — from the office's contributions program, considered among the foremost privacy research funding programs in the world.

“As more and more of our private information becomes available online, we face new privacy risks that haven't been considered in the past,” Christofides said.

“This grant will enable us to explore privacy risks when people share a very specific type of information: genetic and health information.”

People can now order genetic tests directly from private companies rather than going through their doctors. They sign up for the service, send a genetic sample and then receive a report about their health status, Christofides said.

Sometimes the report from consumer genetic testing companies is available online, and people may share it with others and compare results, she said.

“We really don't know what people understand about the possible privacy risks of doing this, in part because having access to this much information about ourselves is a pretty new phenomenon with all of the advances that have happened in genetic testing,” Christofides said.

“We also believe that some people may be ordering these tests through private companies specifically because they think that their health information will be more private this way.”

She and O’Doherty plan to explore how online genetic testing companies communicate privacy risk information and study consumer understanding. They plan to make recommendations and create a guide to help people interpret the privacy risks involved.

“This grant will also give us a chance to learn more about people's reasons for ordering genetic tests online, what they understand about the way these companies treat their private information, and the privacy risks they might face,” Christofides said.

“Ultimately we want to help people to make better, more informed decisions if they choose to disclose their private data online.”

The U of G grant was one of 10 awarded nationally. In 2009, Christofides and then PhD student Amy Muise received a contributions grant from the Privacy Commission to study Facebook and disclosure of personal information.

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