A Bankrupt 23andMe May Quickly Promote Your Most Private Knowledge

As quickly because the genetic testing firm 23andMe filed for bankruptcy on March 23, 2025, issues about what would occur to the non-public info contained in its huge genetic and well being info database have been swift and widespread. A couple of days after, a U.S. choose dominated that the corporate may sell its consumer data as a part of the chapter.

The attorneys normal of a number of states warned their residents to delete their genetic knowledge. California urged its citizens to request that 23andMe delete their knowledge and destroy their spit samples. Michigan’s lawyer normal released a statement warning that “23andMe collects and shops a number of the most delicate private info, our genetic code.”

When prospects initially signed up for 23andMe, they agreed to terms and conditions and a privacy notice that permits the corporate to make use of their info for analysis and growth in addition to share their knowledge, in mixture, with third events. If shoppers consented to extra analysis, which the overwhelming majority did, the corporate can moreover share their particular person info with third events. 23andMe has additionally been clear that whether it is concerned in a chapter or sale of property, shopper info might be sold or transferred.

Whereas 23andMe has warned prospects all alongside about the whole lot that’s at present occurring, many are nonetheless surprised and concerned.

I’m a lawyer and bioethicist who has been learning direct-to-consumer genetic testing for nearly a decade. Understanding what info 23andMe has been amassing, and the way it is perhaps used if bought or shared, might 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 companies to open in america. It was backed by a big funding by Google, which shortly attracted the interest of other investors, permitting 23andMe to thrive when many different direct-to-consumer genetic firms went shortly out of business.

The direct-to-consumer enterprise mannequin is pretty simple: 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 consumers 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 hundreds 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 almost 7 million people’s data, in addition to a failure to revenue sufficient from offering knowledge entry to different non-public sector firms. Lack of personal curiosity in 23andMe knowledge could also be associated to the truth that a lot of the knowledge the corporate collects is self-reported, which is usually thought-about much less dependable than info written down by a physician in a medical document.

What sort of knowledge does 23andMe acquire?

Whereas the saying goes “Should 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 amassing an enormous quantity of their useful knowledge.

And 23andMe collected extra than simply genetic knowledge generated from shoppers’ spit. Eighty-five percent of customers consented to 23andMe research, permitting their individual-level knowledge for use for research. The corporate then collected info from survey questions about their private well being and past, similar to drinking habits and risk tolerance.

Which means that not solely does 23andMe possess the genetic data of 15 million people, nevertheless it additionally possesses virtually a billion extra knowledge factors related to this genetic info. This makes the 23andMe dataset doubtlessly very non-public – and really useful.

At first, drug firms appeared to agree. For instance, in 2018, 23andMe granted pharmaceutical firm GlaxoSmithKline an exclusive license to make use of consented buyer knowledge to develop new medicine. 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, including me, have been warning that permitting 23andMe to gather and use private knowledge was not one which prospects totally understood, or have been truly comfy with.

What ought to 23andMe prospects fear about?

In response to present public concern about knowledge privateness, 23andMe has said that there can be no changes to how it stores and protects data 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 info in civil or prison instances. This occurred in 2018, when police used the genetic testing firm GEDmatch to assist identify the Golden State Killer. Police pretended they have been prospects on the lookout for family tree knowledge and despatched in an old crime scene blood spot. This allowed them to connect with recognized suspects with blood family who had given their genetic info to the corporate as shoppers. Whereas this was in violation of GEDmatch’s personal insurance policies, the proof was efficiently utilized in courtroom.

Second, genetic info might be used to discriminate against customers if it reveals that they’ve or are at excessive threat of growing a genetic illness or dysfunction. The federal Genetic Information Nondiscrimination Act prohibits well being insurers and employers from asking about genetic info or utilizing it to discriminate in work or medical insurance selections. It doesn’t, nevertheless, shield in opposition to discrimination in long-term care or life insurance coverage.

Lots of the warnings from the media and attorneys normal are targeted on genetic info as a result of it’s distinctive to just one individual. However direct-to-consumer genetic testing firms additionally retain an enormous quantity of non-public info from the surveys shoppers are requested to finish. A lot of this info might be embarrassing if it have been inadvertently or deliberately revealed, similar to a person’s intelligence.

Within the 2025 e-book “Careless People,” former Meta govt Sarah Wynn-Williams reported that Fb would use indications of self-consciousness about private look, similar to deleting a selfie, to advertise magnificence merchandise. If firms know such intimate particulars about an individual, they may not solely be used to promote merchandise, but in addition doubtlessly manipulate them over social media or the web in methods they don’t even understand. It might be used for focused promoting or to construct algorithms that exploit an individual’s vulnerabilities.

I consider shoppers are proper to be nervous about how their genetic knowledge might be misused. However the survey knowledge containing all kinds of different private info are not less than as a lot, if no more, of a privacy problem. That is significantly regarding if the information is pooled together with other information out there 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 knowledge. Sooner or later, I might additionally warn shoppers in opposition to freely gifting the non-public sector with details about their fears, hopes, limitations and successes.

That info is efficacious to extra individuals than simply you.

Kayte Spector-Bagdady, Affiliate Professor of Obstetrics and Gynecology, University of Michigan. This text is republished from The Conversation below a Artistic Commons license. Learn the original article.