DNA Dilemma: How to protect your data if 23andMe shuts down

JACKSONVILLE, Fla. — A popular genetic testing company is on the brink of collapse. There are major questions about the company 23andMe’s future, and more importantly to its customers, its bank of genetic data.

For millions of Americans, genetic testing answered a curiosity question, ‘Who am I?’ using your DNA.

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“It started as a joke -- let’s try to see what’s the results are going to be,” George Farah said.

But now, he has more serious questions and concerns to consider.

“I feel like it’s a sensitive information that companies have,” Farah said.

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For people like Farah, who have tested their DNA with 23andMe, they’re worried, about what happens to their genetic data now?

The company he used for genetic testing is 23andMe. It’s on the brink of bankruptcy and what it does with your personal information is unclear.

University of North Florida genetics professor Dr. Matt Gillig said that data bank contains very personal information.

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“It’s an issue of privacy,” Gillig said, “because it’s just like a fingerprint. It’s if it’s on file and it’s out there. Like, you can’t say that it’s not you because you’re the only person that has that, that fingerprint.”

The company assures its users “your privacy comes first” letting the customer decide whether their spit sample is kept by the company and whether they’ll allow it to be used in research. According to the company’s site, 80% of its customers opted into the research option.

That’s a prospect that, understandably, UNF business professor and attorney Mark Addington said makes people uneasy.

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“Consumers rightfully are concerned,” he said. “If they feel like that information could be used in a way that would harm them.”

According to the fine print in 23andMe’s terms and conditions, some of that could be allowed. The company’s legal privacy page says “if we are involved in a bankruptcy, merger, acquisition, reorganization, or sale of assets, your personal information may be accessed, sold or transferred as part of that transaction.” It goes on to say, “We may also disclose personal information about you to our corporate affiliates to help operate our services and our affiliates’ services.”

Federally, Addington said, there aren’t specific protections against that, but does say folks in Florida may be in a better boat thanks to the state’s genetic information nondiscrimination act.

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When asked if the cat is out of the bag if you’ve already checked the box to allow your DNA to be used for testing, Addington said not necessarily.

“Yes, you signed a consent form and you gave consent for using your information in a certain way. But under Florida law, you could withdraw your consent,” Addington said.

None of that has been tested in court when it comes to 23andMe because the company hasn’t made a decision yet about your data. So in the meantime for people like Farah, the possibility is still a scary prospect.

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“You agreed to … those terms and conditions.. nobody ever reads and you’re out of luck. So hopefully nothing bad happens out of that,” Farah said.

If you’re concerned, you can delete your account. That opts you out of any future research and discards your saliva sample. The problem is, if your data has already been de-identified and used in research, you can’t get it back.

It’s important to know, even if you delete your account, 23andMe said it will still hold onto your information including your genetic data, date of birth, and sex, to comply with its legal obligations.

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