Thermopolis resident Jessica Lippincott had a life-changing experience as a result of the 23andMe DNA test she took to explore her family’s medical history, not only learning who her biological father was, but also discovering she had 49 half-siblings
But like other 23andMe customers, she has been doing a little soul-searching after learning the company has gone bankrupt and plans to auction the company — and the genetic data it collected — to the highest bidder.
Even though she’d previously said she wouldn’t delete her genetic data if 23andMe ended up going bankrupt, now that it has actually happened, Lippincott found her brain going into analytic mode asking lots of questions.
What happens to all this DNA data? And do consumers have any say in that?
“It’s always good to question everything,” Lippincott said. “So if I hear something I’m not too sure about, I kind of go down a black hole, doing all the research and reading all the things to kind of come up with my opinion about it, just so I have all the information before making a decision, rather than a shared meme on Facebook or something like that.”
Her deep dive into genetic data revealed that a new 23andMe buyer would still have to follow all the applicable laws that already govern sensitive genetic data.
“That means a buyer still has to abide by certain laws and things,” Lippincott said. “They’re not just going to let any company out there buy it and do whatever they want with the data.”
After settling that question, Lippincott looked at what kinds of things can legally happen to her data, and ultimately decided they were all scenarios she could not only live with, but maybe even applaud.
Like the medical breakthroughs 23andMe had originally promised its treasure trove of genetic data could help spur. A new buyer could still potentially make that happen, Lippincott decided.
And solving cold cases. That’s something Lippincott already knows a lot about because she has a brother who works with the FBI and uses DNA information from sources like 23andMe.
“I’m completely OK with that,” she said. “If I can help a family in the future figure out who a suspect is in a cold case and bring closure to that family, I’m happy to do that.”
So, unlike the millions seeking to delete their 23andMe Data, she’s among those hearing the beat of a different drum. She’s choosing not to delete her data and hoping for a sale to a buyer that could help give that data a brighter future.
“I’m not too worried about my genetic information getting into the wrong hands,” she said. “I feel that maybe there’s a lot of conspiracy theorists out there who are always thinking of the negatives rather than the positives. If my data can be used by a future company to help other people, I’m all for it. I’m not going to delete it.”
Jessica Lippincott grew up as an only child in Wyoming and didn't know she was "donor-conceived" until she did a DNA test in 2017. Now, she's one of 50 half-siblings who have embraced each other as an extended family. (Courtesy Jessica Lippincott) 
Jessica Lippincott grew up as an only child in Wyoming and didn't know she was "donor-conceived" until she did a DNA test in 2017. Now, she's one of 50 half-siblings who have embraced each other as an extended family. (Courtesy Jessica Lippincott) 
Jessica Lippincott grew up as an only child in Wyoming and didn't know she was "donor-conceived" until she did a DNA test in 2017. Now, she's one of 50 half-siblings who have embraced each other as an extended family. (Courtesy Jessica Lippincott) 
Jessica Lippincott grew up as an only child in Wyoming and didn't know she was "donor-conceived" until she did a DNA test in 2017. Now, she's one of 50 half-siblings who have embraced each other as an extended family. (Courtesy Jessica Lippincott)
Troubles Deleting Data
Chances are, had Lippincott decided to go a different way, she might have found it difficult to actually delete her data.
While the company said it’s still allowing consumers to delete their data, with so many national media stories urging people to immediately delete their 23andMe data, the company’s online system became a bit clogged up.
That made it difficult for people like Hannah Snitko, of Cheyenne, who had taken the test during the COVID-19 pandemic, back when she and her fiance were looking for things to do at home.
“We were researching genealogy and came across a deal to buy the 23andMe DNA tests,” she told Cowboy State Daily. “We opted to purchase the tests with both the ancestry results and the health package, to better understand any genetic predispositions we may have.”
The tests were easy to take once they arrived, days later. Each member of the couple filled a tube with saliva, then shipped their samples off, waiting just three weeks for complete results.
“I found a couple genetic markers that put me at a higher predisposition for some conditions and spoke to my doctor about them,” she said. “We were able to rule out or confirm any possible risks for the conditions, and I’m now better prepared for my future health.”
She also learned that her hair had a higher likelihood of being bleached by the sun, and that it was likely cilantro tastes a bit like soap to her.
“Most of the things were accurate for me,” she said. “But I do still love cilantro.”
Both the health screenings and ancestry data were fascinating, Snitko said, and overall, Snitko and her fiance were both happy they’d done the test.
When 23andMe declared bankruptcy, though, the couple had an almost opposite reaction to the news.
“My fiance immediately deleted his data and account from the company,” she said. “His concerns were varied: a hostile foreign company may purchase and access it and find some way to exploit the results.”
Snitko resisted at first. She had enjoyed using the service, and felt many of the concerns being posed in various national articles were over-reactions. But as story after story rolled out, advising people to delete their data, she decided to err on the side of caution.
“We don’t know who might purchase the company, or what they will do with it,” she said. “What kind of rights will (the new company) have with my DNA? Plus, all the benefits of the service have already been used. I have used the service for what I wanted, and I have downloaded a permanent copy of my genetic data for my records.”
Unfortunately, she ran into the same issue as millions of others trying to delete their data.
The site was slow due to increased web traffic as millions of people frantically tried to hit the delete button on their genetic information. Confirmation emails never came, either.
Snitko tried again Thursday, but said her data was still on 23andMe’s domain Friday, even though the company was claiming Wednesday that issues caused by the sudden influx of web traffic have been resolved.
A Pioneer, And The Turning Point
23andMe was a pioneer in the DNA analysis market, valued at $6 billion in 2021, when it first went public. The idea behind it was revolutionary for the time. Detailed DNA analysis from a simple spit sample, highlighting everything from personal disease risks and personality quirks to ancestry data for genealogy and sleuthing.
People found long-lost relatives, learned about ancestry and family trees they never knew they had, and, sometimes, like Lippincott, uncovered huge surprises that changed their lives in astounding ways.
In all, 23andMe attracted more than 14 million customers with its idea. But the problem with its business model was that people generally only needed the one test. Then, they were done with the business.
Attempts to expand the business model beyond a one and done, by offering what is still seen as a treasure trove of medical data to pharmaceutical companies to research cures, never gained enough traction to maintain the company’s profitability.
A 2023 data breach on top of that problem didn’t help. The accounts of 7 million people were exposed, and 23andMe still has 35,000 outstanding claims as a result of that.
The bankruptcy court judge hearing 23andMe’s case in the Eastern District of Missouri (St. Louis) has already signed off on attempts to find a buyer for the company. Bids are due by May 7, after which there will be a hearing to examine the potential sale sometime in June.
An attorney with the U.S. Trustee Program, a division of the Department of Justice that oversees bankruptcies, has asked the judge to appoint an ombudsman to oversee the sale, to help protect consumer data. The judge didn’t signal whether he would do that, but attorneys for the company also pointed out U.S. bankruptcy law already imposes requirements on a buyer to conform to existing privacy policies.
That’s a potential guardrail that may help offer some comfort to those still struggling to delete their genetic data ahead of a 23andMe sale. But the whole experience has already caused many customers to rethink the whole idea of genetic testing in general. That sentiment could mark a turning point for the entire business model.
Snitko, for example, is still happy with what she learned, but doesn’t like the implication, made clear after 23andMe’s bankruptcy, that she’s no longer in control of her personal genetic data, and said she would think twice about such services in the future.
“All in all, while I enjoyed and trusted the service while it was securely owned and operated by 23andMe, I now believe that with the bankruptcy and impending sale of the company, it’s in all our best interests to remove our most personal data from their database,” she said. “Because, plain and simple, we just don’t know what will happen with it. There have been no assurances yet of the security of our data and what will happen going forward. Combined with the loss of control in deleting our data due to website issues, it feels even more urgent.”
Contact Renee Jean at renee@cowboystatedaily.com
Renée Jean can be reached at renee@cowboystatedaily.com.
