A Bankrupt 23andMe Could Soon Sell Your Most Personal Data

As before long as the transmissible testing company23andMe filed for bankruptcyon March 23 , 2025 , concern about what would hap to the personal information contained in its massive familial and health entropy database were swift and widespread . A few day after , a U.S. judge ruled that the fellowship couldsell its consumer dataas part of the bankruptcy .

The attorneys cosmopolitan of several states warned their citizen to edit their genetic data point . Californiaurged its citizensto request that 23andMe edit their datum and destroy their expectoration samples . Michigan ’s attorney generalreleased a statementwarning that “ 23andMe collect and stores some of the most sensitive personal information , our genetical code . ”

When client originally signed up for 23andMe , they agreed toterms and conditions and a privateness noticethat allow for the company to apply their info for enquiry and development as well as deal their data , in aggregate , with third parties . If consumers consented to additional inquiry , which the vast majority did , the company can additionally share their single information with third parties . 23andMe has also been clear that if it is involved in a bankruptcy or sale of assets , consumer informationmight be sell or transferred .

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The fate of the trove of personal information 23andMe has gathered over the years has wide-ranging implications for consumers.

While 23andMe has discourage customer all along about everything that is currently happening , many are stillsurprised and concerned .

I ’m alawyer and bioethicistwho has been studying direct - to - consumer genetic testing for almost a decade . read what selective information 23andMe has been pull in , and how it might be used if sold or shared , can aid clarify concerns for consumer .

What is 23andMe?

In 2007 , 23andMe , name after the23 couplet of chromosomesfound in a human cell , was one of thefirst verbatim - to - consumer genetic testing companiesto undetermined in the United States . It was back up by a large investment by Google , which rapidly appeal theinterest of other investor , appropriate 23andMe to thrive when many other direct - to - consumer genetical caller went quicklyout of line of work .

The direct - to - consumer business example is fair straightforward : A consumer social club a genetic run kit out online , spits into a vacuum tube that amount in the mail , returns it to the company and accesses their results in an online portal . Over15 million consumersbought 23andMe , and the immense majority consented to its inquiry . At its peak , the caller wasvalued at US$ 6 billion .

While the market place ab initio believed in the note value of 23andMe ’s business modelling , its stock has beenin decline for year , and the company oweshundreds of millions of dollarsto creditor .

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reason for this speedy declination admit a drop-off in the sale of trial kit after a2023 hack of almost 7 million masses ’s data , as well as a failure to benefit enough from providing data access to other secret sector companies . Lack of private interest in 23andMe data may be interrelate to the fact that much of the information the companycollects is ego - reported , which is often considered less reliable than entropy write down by a doctor in a medical platter .

What kind of data does 23andMe collect?

While the saying goes “ If you ’re not pay , you ’re the product , ” 23andMe managed to convince its consumers to both pay for AND be the product . It did this by deal genetic testing kit to consumer as well as collecting a massive amount of their valuable data .

And 23andMe collected more than just genetic datum generated from consumers ’ spittle . Eighty - five per centum of customersconsented to23andMe research , allowing their individual - level data to be used for studies . The company then collected information fromsurvey questionsabout their personal wellness and beyond , such asdrinking habitsandrisk leeway .

This means that not only does 23andMe own thegenetic data of 15 million people , but it also possesses almost a billion additional data gunpoint connect with this genetic information . This makes the 23andMe dataset potentially very private – and very worthful .

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At first , drug companies seemed to accord . For example , in 2018 , 23andMe give pharmaceutical companyGlaxoSmithKline an undivided licenseto enjoyment consented customer data to acquire new drugs . GlaxoSmithKline also made a $ 300 million equity investment in 23andMe . When 23andMe went public in 2021 , its$6 billion valuationreflected the promise of this business enterprise poser .

But for over a decade , learner , include me , have been monish that allowing 23andMe to collect and apply personal data point was not one that client full understood , or were in reality comfortable with .

What should 23andMe customers worry about?

In response to current public concern about datum privacy , 23andMe has put forward that there will beno changes to how it salt away and protect dataduring its failure proceeding . But once that stage is through , what exactly should customers worry about ?

First , law enforcement could use genetic information in civil or deplorable cases . This happened in 2018 , when police used the genetic testing company GEDmatch to helpidentify the Golden State Killer . Police pretended they were customers look for family tree data and sent in anold criminal offence fit blood spot . This allow them to connect to know suspect with stemma congenator who had give their genetic information to the company as consumers . While this was in irreverence of GEDmatch ’s own policies , the evidence was successfully used in court .

Second , transmitted information could be used todiscriminate against customersif it demo that they have or are at high risk of developing a transmissible disease or disorder . The federalGenetic Information Nondiscrimination Actprohibits wellness insurers and employers from require about genetic info or using it to discriminate in work or wellness insurance decisions . It does not , however , protect against secernment in long - term aid or life insurance .

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Many of the warnings from the media and attorney universal are focus on genetic information because it is unequaled to only one individual . But direct - to - consumer genetic testing companies also keep back a massive amount of personal information from the surveys consumers are ask to complete . Much of this info could be awkward if it were unknowingly or intentionally revealed , such asa person ’s intelligence .

In the 2025 book “ Careless People , ” former Meta executive director Sarah Wynn - Williams reported that Facebook would apply indications of self - cognizance about personal appearing , such as deleting a selfie , to upgrade sweetheart intersection . If companies sleep with such intimate details about a person , they could not only be used to sell product , but also potentially control them over societal spiritualist or the internet in ways they do not even realize . It could be used for targeted advertizing or to build algorithms that exploit a somebody ’s vulnerabilities .

I consider consumer are good to be worried about how their inherited data could be misused . But the sketch data containing all sort of other personal information are at least as much , if not more , of aprivacy trouble . This is particularly concerning if the data ispooled together with other informationavailable on the cyberspace , like a dating visibility , to make a more detailed – and personal – picture of an individual .

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I am deleting my own 23andMe data . In the future , I would also warn consumer against freely gifting the private sector with information about their fears , hope , limitations and winner .

That selective information is valuable to more people than just you .

Kayte Spector - Bagdady , Associate Professor of Obstetrics and Gynecology , University of Michigan . This clause is republish fromThe Conversationunder a Creative Commons license . show theoriginal article .

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