The 23andme bankruptcy could expose the genetic data of customers

When Christina Snyder Monahan from Irvine received her genetic results for the first time three years ago, she thought there was an error.

The DNA sample she had sent to the company revealed that she was almost 50% Persian, although her knowledge, she had no Persian parents. More than a year later, his mother admitted to having had a “meeting” with another man, who was his true biological father and not the man who raised him.

After adapting to the shock, Monahan adopted the news, using 23andme to meet parents whom she did not know that she had, including a Germain cousin and four half-brothers and sisters. Her biological father died before she learned of her existence.

“I was completely blown away,” said Monahan. “The application gave me significant information on the region in Iran of which my father was from.”

One of the 15 million people who gave their genetic information to 23andm, Monahan now treats the news that the company based in South San Francisco bankrupt And is preparing to sell his treasure of sensitive data. She appreciates the links that the platform has brought to her, she said, but worries about the place where her genetic equipment could finish, echoing the concerns of other customers.

What happens to DNA?

“The California Attorney General suggests that people Delete their accounts And that makes me think twice, “said Monahan.” There could be a danger that hides there where the repercussions. “”

Once a promising company is briefly valued at $ 6 billion after being published public in 2021, 23andme popularized DNA test kits at home and gave birth to a cottage industry of ancestry hunters and crime likely.

But the company has failed to attract regular customers and could not use the power of genome cartography to develop in other sources of income such as the development of drugs. The company was also the victim of internal quarrels, which all led to the resignation of the Chief Executive Officer and a bankruptcy deposit of Chapter 11 on Sunday.

The United States’s bankruptcy court for the Missouri eastern district authorized this week at the 23andme to sell almost all of its assets, including its genetic information database. Although any potential buyer can accept to comply with the 23andme privacy policy, the uncertain future of data has raised concerns about the possibility of falling into bad hands.

“Genetic information is only sensitive because it reveals immutable characteristics about ourselves,” said Sara Geoghegan, main lawyer for Electronic Privacy Information Center. “I would be very worried if I had gave a swab at 23andm. There is not much that we can do to control what is happening to him. ”

Online company service conditions Said, “Your sample is treated irreversibly and cannot be sent to you. Any information derived from your sample remains subject to the rights which we keep as indicated in these terms. “

23Andme Customers are protected by the conditions of use, but these conditions can be modified by the company or its new owner at any time, said Geoghegan. Service conditions are also often written widely or vaguely, and “privacy policies are completely inadequate to protect our personal information,” she said.

California Atty. General Rob Bonta published a consumer alert after the announcement of the bankruptcy of 23andm to remind Californians their right to have their genetic data deleted under the Law on the confidentiality of genetic information and the California Consumer Privacy Act.

Customers can delete their account and ask their samples to be destroyed by connecting and accessing the settings page. They can also withdraw authorization from third -party researchers to use their data.

“California has solid confidentiality laws that allow consumers to take control and ask a company to delete its genetic data,” said Bonta. “Given the reported financial distress of 23andm, I remind Californians to consider invoking their rights and destroying any sample of genetic equipment held by the company.”

The 23andme website crashed last week as customers rushed to delete their data, the Wall Street Journal reported. As concerns were spreading, the company has published a statement Combining that “potential buyers must, among other things, agree to comply with the confidentiality policy of consumers of 23andme and to all applicable laws with regard to the processing of customer data”.

A company spokesperson refused to comment on this story and referred to previous statements.

In 2023,, A violation of data from the company assigned nearly 7 million customers, and last year, 23andm agreed to pay $ 30 million to pay a collective appeal accusing the company of not having protected its customers.

The level of risk that 23 and 23 and largely faces largely depends on which ends up buying the company, said Christo Wilson, a teacher of computer sciences at the Northeast University who specializes in the confidentiality and security of online data.

“I think people should be worried“, He said.” There are many different actors who would like this data for many different purposes, far beyond what you probably think that you consented when you were simply interested in genealogy. »»

Pharmaceutical companies, insurance companies or security forces may be interested in obtaining data, said Christo. An insurance company can use genetic information to determine the pre-existing health conditions and therefore increase rates for this person, he said.

Spitting

23andme started almost two decades ago when the co-founder Linda Avey had the idea of ​​a genetic direct consumption test service.

Anne Wojcicki met Avey through her then boyfriend, the co-founder of Google, Sergey Brin, who had expressed his interest in Avey’s work. The couple co -founded the company in 2006 and Wojcicki was appointed CEO.

A year later, Wojcicki and Brin got married, and Google announced its investment in 23andme shortly after. In 2009, wanting to lead the company itself, Wojcicki persuaded two independent members of the board of directors to dismiss Avey, according to the Wall Street Journal.

At the initial price of $ 399, DNA test kits attracted attention but were too expensive for the average consumer. This changed in 2012 when new investor financing allowed the company to reduce the price of kits to $ 99 for ancestry services and $ 199 for health and advance information. Kits quickly became birthday gifts and stockings.

At its peak, 23andme drew the attention of celebrities and held “spit celebrations”, where high -level customers spit in a tube to provide their DNA sample. The samples have helped people fully discover new family trees and could reveal substantial health information, such as a genetic predisposition to cancer. The genetic data collected by services similar to 23andme were used to catch the infamous Golden State Killer in 2018.

Problem signs

While the rise in the company was celebrated, its expansion efforts were hampered by the challenges. In 2013, the Federal Drug Administration interrupted sales of test kits because 23andme had not obtained the agency’s approval to market the kits. The company then received approval after completing a regulatory examination process.

In addition, as users must provide a DNA sample once to take advantage of the 23andme services, the company has not established a sustainable commercial model based on regular customers. In addition, 23andme struggled to occur to concede to pharmaceutical companies, which could have stimulated the profits.

Last November, the company announced that it would dismiss 40% of its workforce, or more than 200 employees, and would close its therapeutic division.

The actions of the company have dropped in value, lowering more than 81% so far this year. The day after the announcement of bankruptcy, the actions dropped by around 50% and closed Friday at 61 cents.

Jo Levy, lawyer for trials in Northern California and 23andme client, said that she had used the platform to connect with parents she had never met before. Despite the prosecutor general’s warning, she urged consumers not to panic on the fate of their data.

“The fact that they have filed a record does not mean that tomorrow a harmful company will buy the data,” said Levy. “There could be many reasons why people would like to maintain their accounts and I would warn people not to react excessively.”

Wojcicki explained His intentions Backing on the company with a message on X last week. His resignation occurred for weeks after a company’s board of directors rejected his acquisition proposal, and last September, all independent members of the board of directors resigned after the missed negotiations with Wojcicki.

The potential sale of the company’s genetic data is unprecedented, said Christo, professor of computer science. Its fear is that a company is looking to buy 23andm only to access and use its data.

“There are certainly other databases filled with genetic information, but they are held by researchers such as hospitals and are subject to ethical directives very different from those of a private enterprise,” he said. “I have never heard of something like that before.”