This 2018 picture reveals a 23andMe saliva assortment equipment used for DNA testing. The California-based firm introduced this week that it was going out of business.
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Eric Baradat/AFP/Getty Pictures
The genetic testing firm 23andMe — which permits customers to spit in a tube and ship away the pattern for an in depth DNA evaluation — is submitting for chapter.
The California biotech agency introduced in a press release this week that it had entered the federal chapter course of with the purpose of discovering a purchaser to deal with its ongoing cash troubles. Co-founder Anne Wojcicki additionally has stepped down as CEO, and stated in a publish on X she hopes to buy the corporate herself. The board rejected a suggestion she made earlier this month, in response to a press launch.
23andMe has confronted monetary hardship for years, struggling to beat the truth that many individuals who went to the web site for a one-time DNA take a look at did not develop into repeat prospects. In November, the corporate laid off greater than 200 staff, or roughly 40% of its employees.
The chapter announcement additionally comes lower than two years after 23andMe suffered a large information breach affecting 6.9 million buyer accounts.
The likelihood that the corporate, as soon as valued at $6 billion after it went public in 2021, could possibly be offered has raised issues about what would occur to the delicate data of its greater than 15 million customers.
In its chapter announcement, 23andMe stated the info privateness of its prospects can be an “essential consideration” in any sale. However federal legislation does little to safe genetic data given over to a personal firm, two authorized consultants on information privateness stated.
“Usually, if there’s a lot private information {that a} group has, it is possibly in a hospital setting or a analysis setting and will be ruled by extra significant safeguards,” stated Suzanne Bernstein, counsel on the nonprofit Digital Privateness Data Heart.
“The size of how a lot extremely delicate information 23andMe has is exclusive,” she stated.
Is your DNA information protected by legislation? It relies upon
For a lot of 23andMe prospects, the corporate holds two delicate items of knowledge: the user-provided saliva pattern, and the detailed genetic profile created from it.
In an FAQ in regards to the chapter posted on its web site, 23andMe stated a brand new proprietor must abide by “relevant legislation” governing using consumer information, however information privateness consultants say there is not a lot on the books.
The Well being Insurance coverage Portability and Accountability Act, or HIPAA, applies to well being care suppliers and insurers however not direct-to-consumers corporations like 23andMe, in response to Anya Prince, a College of Iowa legislation professor who research well being and genetic privateness. One other legislation known as the Genetic Data Nondiscrimination Act bars employers and medical insurance corporations from discriminating towards folks as a consequence of genetic data.
“That is just about it on the federal degree,” Prince stated.
Some states have adopted their very own legal guidelines overlaying genetic privateness. A minimum of 11 U.S. states have enacted legal guidelines giving shoppers a say in how their genetic information is used, in response to an article printed by Prince in 2023. These legal guidelines usually let customers request that the businesses delete their information and require legislation enforcement companies to get a warrant or subpoena to entry genetic data, Prince stated. 23andMe already adheres to each of these insurance policies, she added.
23andMe additionally says any genetic information it shares with researchers is stripped of figuring out data, akin to names and delivery dates. In its chapter FAQ, the corporate stated it hopes to “safe a companion who shares in its dedication to buyer information privateness.”
How you can shield your information, in response to consultants
23andMe will stay in operation by way of the chapter proceedings, and the corporate says prospects can nonetheless delete their information and shutter their accounts.
California Legal professional Basic Rob Bonta stated in a shopper alert final week that residents ought to “take into account invoking their rights and directing 23andMe to delete their information and destroy any samples of genetic materials” the corporate has.
Bernstein of the Digital Privateness Data Heart stated any involved 23andMe prospects ought to delete their information, request that their saliva pattern be destroyed and revoke any permissions they could have given to make use of their genetic data for analysis.
“We’d suggest taking these actions and advocating to your state and federal representatives to go sturdy shopper privateness legal guidelines,” she added, “as that is simply the primary instance of an organization like this with great quantities of delicate information being purchased or offered.”
Even earlier than a attainable sale goes by way of, Prince, the legislation professor, stated she wonders how many individuals know what information 23andMe already shares and with whom. For instance, the corporate has given over anonymized information to the pharmaceutical large GSK for years to assist it develop new medication.
“Everyone’s fearful about what a brand new firm can do with the info — and that could be a concern — however frankly a number of the issues that persons are fearful about, 23andMe already can do or already does,” Prince stated.
