Genealogy websites

Privacy expert warns of risks of submitting DNA to genealogy websites

Privacy expert warns of the risks of submitting DNA samples to genealogy websites.

Customers looking for information about their family history can take a simple home DNA test, usually by spitting into a vial, and send it to genealogy services such as AncestryDNA or 23andMe. Soon after, the company will send the consumer all kinds of personal data. For example, 23andMe provides clients with information about their family tree, their genetic predisposition to certain diseases, and even their likely traits.

Like millions of others, Steven Smith wanted to know more about his family’s past. So he submitted a sample of his saliva to a DNA testing company.

“My great-grandfather seemed to be on a boat from somewhere, so we didn’t really know that,” he told CTV Edmonton on Tuesday.

A few weeks later, Smith received a detailed online profile that included information about his genes, family tree, and even, that he was more likely to drink coffee.

As interesting as this information is to Smith, privacy expert Timothy Caulfield has warned that there could be risks associated with this type of personal data online.

Caulfield said there are growing concerns that insurance companies could access genetic information and use it in their claims.

“People could use genetic information to discriminate against you if you have a predisposition for a particular type of disease,” he said. “This is definitely something people are worried about.”

It’s not just insurance companies that are worried about Caulfield.

“If marketers have other elements like your search habits, where you live, your education, and they also have that element, it creates a more complete picture of you,” he said. .

“Do you really want this information to be disseminated?” “

The two DNA ancestor and 23 and me have detailed privacy policies that require customers to give their express consent before their information is shared with third parties. The companies also say 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, the Alberta Privacy Commissioner urged consumers to ask genealogy companies about “how the company will store, use and retain your DNA sample.”

Caulfield recommends reviewing the company’s privacy policy on its website.

“Look at their privacy page and assume that there may be more risk than there is actually disclosed,” he suggested.

The Privacy Commissioner has also reminded Canadians of the importance of taking precautions.

“Genetic information is deeply personal and cannot be changed in the event of a breach of privacy,” the statement said.

With reporting by Shanelle Kaul of CTV Edmonton


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