The Privacy Implications of DNA Testing Sites
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At-home genetic testing companies — like Ancestry and 23andMe — came onto the market last year and have exploded in popularity. But, like so many other technologies, it took a little longer for people to wake up to the privacy implications. And when it comes to DNA, there are many.
It goes without saying, but your DNA is completely uniquely yours and yours alone. It contains information about your ancestry, your health — even personality traits. But if you send a sample of it in to one of these genetic testing companies, they then own a part of it. And, by extension, a part of you.
So before you spit into a tube and send it through the mail to find out your ethnic heritage or potential health problems, consider these five privacy implications of using DNA testing sites.
The data could be hacked
As we’ve seen over and over in recent years, all companies are now vulnerable to hacking. And a study last year found that DNA companies in particular have pretty weak security systems in place. If you’re concerned about your Social Security number or credit card info being stolen in a hack, then you should absolutely be concerned about your DNA being stolen.
Think of what that information could potentially be used for. Altering the scene of a crime, for example, or making it seem like someone has a disease that they don’t have. The potential implications of a DNA database hack are vast — probably even too vast for us to know at this point in time.
You don’t know exactly who it’s being shared with
While most of the companies have information about who data is being shared with, it’s not always clear. Most share with research partners and all have to share it with the labs who do the testing, but there are other “third parties” that may be privy to your private data. According to an investigation by Gizmodo, it’s not always clear who those third parties are, what they use the data for, or how they protect it. And, of course, the more people or organizations that have the data stored, the more exposed it is to theft and hacking.
You might expose secrets that could disrupt your family
An increasing number of people are finding that their DNA results are exposing family secrets that family members would prefer were kept secret.
You’re also exposing your family member to potential privacy violations
When you submit your genetic information, you’re also submitting information about your biological family members. That means that they’re exposed to any privacy violations you might be exposed to, as well — and they didn’t give consent for that.
It could affect your insurance rates
While most of the companies have policies about not sharing your information with insurance companies, that doesn’t prohibit insurance companies from asking if you’ve taken one of the tests. According to some experts, if you fail to disclose information that you’ve learned from an at-home genetic test, it may be considered fraud.
It could get you convicted of a crime
The laws are still new, but it’s possible that the data collected by these sites may be used by law enforcement to solve crimes. The most famous instance so far the Golden State Killer, a serial killer and rapist who evaded police for decades and was finally captured when they utilized data from a genealogy website. The uploaded sample matched the sample of a relative, whose information the police used to track down the Golden State Killer.
It remains to be seen whether the law will provide more protections for the data complied by these companies but, as of now, there are very few. So it’s up to you to decide what risks you want to take with your personal DNA data. Think about it for a while before submitting. Is it worth it?Share this post
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