HOUSTON – 23andMe, the popular at-home genetic testing company, has helped millions of people uncover their family roots and health risks through DNA analysis.
However, recent financial troubles have raised concerns for its 15 million customers, especially about what could happen to their sensitive genetic data if the company goes under. Some fear that their personal information could be sold or used in ways they never expected.
Sandy Zimmer of Houston purchased a kit a few years ago off whim. In the back of her mind, she did think about her family health.
“Both my parents passed away from cancer,” Zimmer said. “So, you want to see the likelihood of having something like that crop up. But that was back in the day when everyone smoked.”
“The more you think about it, the more concerning it becomes,” she added.
Financial Trouble and the Risk to Personal Data
As headlines highlight the company’s uncertain future, many customers are left wondering: what happens to the DNA data they’ve submitted?
23andMe, which has gained millions of users eager to learn about their ancestry and genetic health risks, is currently facing major financial difficulties. The company’s stock value has plummeted by 98%, raising concerns about its long-term viability. This has sparked questions about whether the company could go bankrupt, and if so, what that would mean for the personal information it holds.
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One of the biggest concerns is that the data customers submit to 23andMe is not protected like traditional health records. While the company provides genetic insights and health reports, it is not classified as a medical entity. This distinction means that the genetic information provided by users isn’t subject to the same privacy protections that apply to healthcare records.
Moreover, 23andMe’s privacy policy, in its fine print, gives the company the right to sell data or share it with third parties for research purposes.
“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 and this Privacy Statement will apply to your Personal Information as transferred to the new entity,” the company states in its privacy policy page under ‘Commonly owned entities, affiliates and change of ownership.’ “We may also disclose Personal Information about you to our corporate affiliates to help operate our services and our affiliates’ services.
As the company faces financial pressure, experts like Dr. James Langabeer, a professor of emergency medicine and biomedical informatics at the University of Texas Health Science Center, are concerned that the company might sell user data to raise cash.
“When a company is struggling financially and needs to make payroll, the temptation to sell data for short-term profit becomes much stronger,” he warns.
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“My fear, as someone involved in informatics, is when you have a struggling company that is really unsure about how are we going to make cash flow, how are we going to make payroll,” Langabeer continued. “When you’re forced with these really drastic measures, you might take shortcuts. And shortcuts for us would be do they do something with this data that might make them short-term money?”
How Could Your Data Be Used?
The potential for personal data to be used against consumers is significant. Dr. Langabeer suggests that insurance companies could use genetic data to make decisions about life insurance premiums or even deny coverage altogether.
“People might get turned down for life insurance because the insurer knows more about you than you knew about yourself,” he explains.
But it’s not just individuals who submit their DNA that could be affected. Valerie Gutmann-Koch, a law professor at the University of Houston Law Center, explains that genetic information from family members could be used to draw conclusions about you, even if you didn’t submit your own genetic data.
“Genetic information is unique in the sense that even if you didn’t test, if a family member did this test, that can help,” she said. “That can tie their traits to your traits, it’s ways to learn about these individuals. Even if you didn’t do the test.”
She further explained the company already shares the data of its customers with third-party researchers, but they hide the identity of the individuals.
“Even though 23andMe generally and their associates generally de-identified or anonymous that data, that doesn’t mean that that amount of information isn’t going to be incredibly useful for insurance companies in making various decisions around how to price point for things, how to how to make their more broad-based decisions,” she explained. “So, even if they’re not being used on an individual discriminatory level, it could be used to discriminate against communities and groups. Also, you know, there’s always the concern that even though this information is de-identified, science is moving really quickly, it is getting easier and easier to re-identify information.”
Can You Protect Your Data?
Customers can take steps to protect their genetic data. 23andMe allows users to delete their data by adjusting their account settings. Once you request the removal, the company has 30 days to comply. However, it’s important to note that any data already shared with third parties may not be recoverable.
“I’m most concerned about the fact that they have all of this information, that there aren’t very many controls over how that information can and is shared already,” Gutmann-Koch said. “And in some ways, 23andMe has been that the adults in the room, they’ve at least had made efforts to protect that information and to identify that information and anonymize that information and protect that information by following some of the state rules and other rules around data protection.”
Langabeer urges people to be as protective with their genetic information as they are with their social security numbers, bank accounts, and more.
“Just be cautious that things that we’re giving up loosely today at some point, if stored, can be reprocessed and reanalyzed later in the future,” Langabeer said. “And believe me when I say every health care provider, the major hospitals, insurance companies, they know this.
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In response to concerns, a 23andMe spokesperson emphasized that the company is focused on the long-term success of its business. They maintain that customers have control over their genetic information and can choose whether or not to share it.
“We believe customers own their personal information and should be in the driver’s seat throughout their genetic journey -- this means providing transparency and choice all along the way so they can decide if they want to share their data, and if so how that data is shared,” the spokesperson said.
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However, even with assurances from the company, customers like Zimmer remain uneasy.
“I’m just not happy with the idea of my DNA being sold,” Zimmer said.
Questions to 23andMe
Rilwan: Who owns DNA submitted to the company? Does the company own it?
23andMe: We believe customers own their personal information and should be in the driver’s seat throughout their genetic journey -- this means providing transparency and choice all along the way so they can decide if they want to share their data, and if so how that data is shared.
Rilwan: How can people remove their DNA from the company’s database?
23andMe: Customers always have the option to delete their account at any time, and once the request is confirmed we will immediately and automatically begin the deletion process. Deleting an account and associated data will permanently delete the data associated with all profiles within the account. If a customer asked us to store their genetic samples, they will be discarded. For more on the process please see here: https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-23andMe-Account-Closure
Rilwan: Do you have confidence in the future of the company?
, You can reference Anne Wojcicki’s quote in our earnings press release from today (Tuesday, November 12, 2024):
“We are making significant progress to ensure the long-term success of the business as we continue on our mission,” said Anne Wojcicki, CEO and Co-Founder of 23andMe. “We have been focused on growing our subscription business by adding more value and driving greater engagement, and as a result, we’ve more than doubled our membership services revenue from the prior year quarter. We will continue to prioritize driving recurring revenue through our subscription business, in addition to growing our research partnership business as we look to the future.”
