When you send off your DNA, the data that's extracted belongs to the site to which you sent it. That data can then be sold.
Sending your DNA to a website to find out your background has become trendy. But is there a hidden cost?
United States DNA testing company 23andMe is in a financial crisis, raising questions about what will happen to the data it holds on 15 million customers worldwide.
New Zealanders are concerned their genetic information could be on-sold and used for other purposes, including insurance or law enforcement.
Privacy lawyer Rick Shera told The Front Page that, when you send off your DNA, the sequence is extracted and stored on the company’s systems.
“So when you do this, you agree to the terms of use in their privacy policies. By and large, these organisations are based in the United States.
“Then there are laws which might apply over and above the privacy policy in the particular jurisdiction or country where the organisation is based.
“So they own that data set. And so the privacy policies will generally often say in the event of a sale of our business, we can sell our assets, including that personal information you’ve given.”
There might be some controls around the information sold but, with so many jurisdictions and different laws, it was hard to navigate, he said.
“In any of those scenarios where the assets are sold, we don’t have any control over who might be the purchaser of those assets and what they then might use that information for.
“Worst-case scenario could end up in a jurisdiction that has no privacy protection whatsoever.”
Handing over your credit card information or driver’s licence to a company was a different scenario, Shera said.
“But at the end of the day, you can change your driver’s licence, you can change your credit card, you can change your passwords and so on. You can’t change your DNA.”
His advice for anyone wanting to sign up for one of these sites?
“Don’t,” he said. “People have to understand the potential downsides of doing it and then balance that against the buzz of finding out you have 60% Scottish ancestry.”
Listen to the full episode to hear more about the dangers of handing over your DNA.
The Front Page is a daily news podcast from the New Zealand Herald, available to listen to every weekday from 5am. The podcast is presented by Chelsea Daniels, an Auckland-based journalist with a background in world news and crime/justice reporting who joined NZME in 2016.
You can follow the podcast at iHeartRadio, Apple Podcasts, Spotify, or wherever you get your podcasts.
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