A privacy expert is warning of the risks of submitting DNA samples to genealogy websites.
Customers seeking information about their family history can complete a simple at-home DNA test, usually by spitting into a vial, and send it in to genealogy services such as AncestryDNA or 23andMe. A short time later, the company will send the consumer all kinds of personal data. For example, 23andMe provides customers with information on their family tree, their genetic predisposition to certain diseases and even, their likely traits.
Like millions of others, Steven Smith wanted to learn more about his family’s past so he submitted a sample of his saliva to a DNA testing company.
“My great-grandfather seemed to hop on a boat from somewhere so we didn’t really know,” he told CTV Edmonton on Tuesday.
A few weeks later, Smith received a detailed online profile that included information about his genes, his family tree, and even, that he was more likely to drink coffee.
As interesting as this information was for Smith, privacy expert Timothy Caulfield cautioned that there could be risks associated with having this type of personal data online.
Caulfield said there is growing concern that insurance companies might be able to access genetic information and use it in their claims.
“People could use genetic information to discriminate against you if you have predispositions for a particular kind of disease,” he said. “That is definitely something that people are worried about.”
It’s not only insurance companies Caulfield is concerned about.
“If marketers have other pieces, say your search habits, where you live, your education, and they have this piece also, it does create a more comprehensive picture of you,” he said.
“Do you really want that information out there?”
Both AncestryDNA and 23andMe have detailed privacy policies that require customers to provide their explicit consent before their information is shared with any third parties. The companies also state that they do not provide genetic information to insurance companies or employers and require a valid legal process to share it with law enforcement.
In a statement in December, Alberta’s privacy commissioner urged consumers to question genealogy companies about “how the company will store, use, and retain your DNA sample.”
Caulfield recommends examining the company’s privacy policy on their website.
“Look at their privacy page and then assume there are perhaps more risks than there really are disclosed,” he suggested.
The privacy commissioner also reminded Canadians about the importance of taking precautions.
“Genetic information is deeply personal, and cannot be changed in the event of a privacy breach,” the statement said.
With a report from CTV Edmonton’s Shanelle Kaul
