By Kayte Spector-Bagdady, College of Michigan
As quickly because the genetic testing firm 23andMe filed for chapter on March 23, 2025, issues about what would occur to the non-public data contained in its huge genetic and well being data database have been swift and widespread. A couple of days after, a U.S. choose dominated that the corporate may promote its shopper information as a part of the chapter.
The attorneys normal of a number of states warned their residents to delete their genetic information. California urged its residents to request that 23andMe delete their information and destroy their spit samples. Michigan’s lawyer normal launched a press release warning that “23andMe collects and shops among the most delicate private data, our genetic code.”
When prospects initially signed up for 23andMe, they agreed to phrases and circumstances and a privateness discover that enables the corporate to make use of their data for analysis and growth in addition to share their information, in combination, with third events. If shoppers consented to further analysis, which the overwhelming majority did, the corporate can moreover share their particular person data with third events. 23andMe has additionally been clear that whether it is concerned in a chapter or sale of property, shopper data is likely to be bought or transferred.
Whereas 23andMe has warned prospects all alongside about every thing that’s presently occurring, many are nonetheless stunned and anxious.
I’m a lawyer and bioethicist who has been learning direct-to-consumer genetic testing for nearly a decade. Understanding what data 23andMe has been gathering, and the way it is likely to be used if bought or shared, will help make clear issues for shoppers.
What’s 23andMe?
In 2007, 23andMe, named after the 23 pairs of chromosomes present in a human cell, was one of many first direct-to-consumer genetic testing corporations to open in the US. It was backed by a big funding by Google, which shortly attracted the curiosity of different traders, permitting 23andMe to thrive when many different direct-to-consumer genetic corporations went shortly out of enterprise.
The direct-to-consumer enterprise mannequin is pretty easy: A shopper orders a genetic take a look at package on-line, spits right into a tube that comes within the mail, returns it to the corporate and accesses their leads to an internet portal. Over 15 million shoppers purchased 23andMe, and the overwhelming majority consented to its analysis. At its peak, the corporate was valued at US$6 billion.
Whereas the market initially believed within the worth of 23andMe’s enterprise mannequin, its inventory has been in decline for years, and the corporate owes a whole lot of tens of millions of {dollars} to collectors.
Causes for this fast decline embrace a lower within the sale of take a look at kits after a 2023 hack of just about 7 million folks’s information, in addition to a failure to revenue sufficient from offering information entry to different personal sector corporations. Lack of personal curiosity in 23andMe information could also be associated to the truth that a lot of the data the corporate collects is self-reported, which is usually thought-about much less dependable than data written down by a physician in a medical file.
What sort of information does 23andMe accumulate?
Whereas the saying goes “In case you’re not paying, you’re the product,” 23andMe managed to persuade its shoppers to each pay for AND be the product. It did this by promoting genetic testing kits to shoppers in addition to gathering an enormous quantity of their worthwhile information.
And 23andMe collected extra than simply genetic information generated from shoppers’ spit. Eighty-five p.c of consumers consented to 23andMe analysis, permitting their individual-level information for use for research. The corporate then collected data from survey questions about their private well being and past, reminiscent of consuming habits and threat tolerance.
Which means not solely does 23andMe possess the genetic information of 15 million folks, however it additionally possesses nearly a billion further information factors related to this genetic data. This makes the 23andMe dataset probably very personal – and really worthwhile.
At first, drug corporations appeared to agree. For instance, in 2018, 23andMe granted pharmaceutical firm GlaxoSmithKline an unique license to make use of consented buyer information to develop new medication. GlaxoSmithKline additionally made a $300 million fairness funding in 23andMe. When 23andMe went public in 2021, its $6 billion valuation mirrored the promise of this enterprise mannequin.
However for over a decade, students, together with me, have been warning that permitting 23andMe to gather and use private information was not one which prospects totally understood, or have been really snug with.
What ought to 23andMe prospects fear about?
In response to present public concern about information privateness, 23andMe has acknowledged that there shall be no modifications to the way it shops and protects information throughout its chapter proceedings. However as soon as that stage is thru, what precisely ought to prospects fear about?
First, regulation enforcement may use genetic data in civil or legal circumstances. This occurred in 2018, when police used the genetic testing firm GEDmatch to assist establish the Golden State Killer. Police pretended they have been prospects searching for family tree information and despatched in an outdated crime scene blood spot. This allowed them to connect with identified suspects with blood family who had given their genetic data to the corporate as shoppers. Whereas this was in violation of GEDmatch’s personal insurance policies, the proof was efficiently utilized in court docket.
Second, genetic data might be used to discriminate towards prospects if it exhibits that they’ve or are at excessive threat of growing a genetic illness or dysfunction. The federal Genetic Data Nondiscrimination Act prohibits well being insurers and employers from asking about genetic data or utilizing it to discriminate in work or medical insurance selections. It doesn’t, nevertheless, defend towards discrimination in long-term care or life insurance coverage.
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Lots of the warnings from the media and attorneys normal are centered on genetic data as a result of it’s distinctive to just one individual. However direct-to-consumer genetic testing corporations additionally retain an enormous quantity of non-public data from the surveys shoppers are requested to finish. A lot of this data might be embarrassing if it have been inadvertently or deliberately revealed, reminiscent of an individual’s intelligence.
Within the 2025 ebook “Careless Folks,” former Meta govt Sarah Wynn-Williams reported that Fb would use indications of self-consciousness about private look, reminiscent of deleting a selfie, to advertise magnificence merchandise. If corporations know such intimate particulars about an individual, they may not solely be used to promote merchandise, but in addition probably manipulate them over social media or the web in methods they don’t even notice. It might be used for focused promoting or to construct algorithms that exploit an individual’s vulnerabilities.
I imagine shoppers are proper to be nervous about how their genetic information might be misused. However the survey information containing all kinds of different private data are a minimum of as a lot, if no more, of a privateness downside. That is notably regarding if the information is pooled along with different data accessible on the web, like a courting profile, to create a extra detailed – and private – image of a person.
I’m deleting my very own 23andMe information. Sooner or later, I’d additionally warn shoppers towards freely gifting the personal sector with details about their fears, hopes, limitations and successes.
That data is efficacious to extra folks than simply you.
This text is republished from The Dialog, a nonprofit, unbiased information group bringing you info and reliable evaluation that will help you make sense of our complicated world. It was written by: Kayte Spector-Bagdady, College of Michigan
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Kayte Spector-Bagdady receives funding from the Nationwide Middle for Advancing Transnational Sciences and the Greenwall Basis.
