23Andme may sell greater than just genetic data – the private survey information she has collected can be a knowledge protection problem

As soon because the genetic test company 23Andme registered as bankruptcy On March 23, 2025, the concerns in regards to the personal information contained of their massive genetic and health information database were quickly and widespread. A couple of days later, a US judge decided that the corporate could Sell ​​its consumer data as a part of bankruptcy.

The general states of several states warned their residents to delete their genetic data. California pushed his residents To apply for 23Andme delete their data and destroy their spit samples. Michigan's Attorney General published a proof Warning that “23Andme some of the most sensitive personal information, our genetic code, collects and stores”.

When customers originally registered for 23Andme, they agreed General terms and conditions and data protection awareness This allows the corporate to make use of its information for research and development and share its data with third parties. If consumers comply with additional research results that the overwhelming majority carried out, the corporate can even share their individual information to 3rd parties. 23Andme was also clear that whether it is involved in bankruptcy or selling assets, consumer information Can be sold or transferred.

While 23Ande has warned customers of all the pieces that’s currently happening on a regular basis, many are still many surprised and fearful.

I’m a Lawyer and bioethics Who has been studying direct-to-consumer guest tests for nearly a decade. If you understand what information 23Andme collected and learn how to use it if you find yourself sold or shared, you’ll be able to make clear the concerns for consumers.

What is 23andme?

In 2007 23Andme, named after the 23 pairs of chromosomes Found in a human cell was certainly one of the First-to-Consumer Gentests company open within the United States. It was supported by a big investment by Google that attracted quickly Interest other investorsand 23andme thrive when many other genetic firms went quickly with direct consumers out of the business.

The business model for the direct consumer is pretty easy: a consumer orders a genetic test kit online, spits right into a tube that receives by post, to the corporate and accesses the leads to a web-based portal. Over 15 million consumers Bought 23Ande, and the overwhelming majority agreed with their research. At its climax the corporate was value 6 billion US dollars.

https://www.youtube.com/watch?v=rloakmce3ZG

While the market initially believed in the worth of 23andmes business model, his share was For years in declineAnd the corporate owes Hundreds of million dollars Creditor.

The reasons for this quick decline are a decline within the sale of test kit in accordance with A 2023 Hack of just about 7 million people datain addition to a failure to learn enough to make sure data access to other private sector firms. An absence of personal interest in 23Andme data might be related to the indisputable fact that a big a part of the data Collecting is registered yourselfWhich is commonly considered less reliable than information that a physician recorded in a medical record.

What kind of information collects 23Andme?

While the proverb is: “If you don't pay, you’re the product, 23Andme managed to persuade its consumers to pay each for the product and to be the product. This was done by selling genetic test kits to consumers and collecting a considerable amount of their useful data.

And 23Andme collected greater than just genetic data that were generated from the spit from the spitting of consumers. 85 percent of shoppers agreed to 23Andme researchin order that your data might be used for studies at a person level. The company then collected information from Questioning About your personal health and beyond, reminiscent of Drinking habits And Risk tolerance.

This implies that 23Ande not only has that Genetic data from 15 million peopleBut it also has almost a billion additional data points related to these genetic information. This may make the 23Andme data record very private – and really useful.

First of all, pharmaceutical firms appeared to agree. For example, 23Andme granted the pharmaceutical company in 2018 Glaxosmithklin an exclusive license Use constructed customer data for developing latest medication. Glaxosmithkline also made a stock investment of 300 million US dollars in 23Andme. When 23andme went to the stock exchange in 2021, it’s Evaluation of 6 billion US dollars Rocked the promise of this business model.

But for over a decade, the scientists have warned, including me, that it doesn’t enable one who fully understood customers or with whom that they had actually trusted themselves.

What should 23 and customers worry about?

In response to current public concern about data protection, 23Andme said that there shall be No changes in the way it stores and protects data During his bankruptcy proceedings. But what should customers get fearful as soon as this level is completed?

First, the law enforcement authorities could use genetic information in civilian or criminal matters. This happened in 2018 when the police used the Gentests company Gedmatch to assist Identify the Golden State Killer. The police pretended to be customers on the lookout for genealogy data and sent one to at least one Old crime scene spot. This enabled them to attach with known suspects with blood conditions that the corporate had given their genetic information as a consumer. While this violates Gedmatch's own guidelines, the evidence was successfully utilized in court.

Second, genetic information could possibly be used Discriminate customers If it shows that you have got a high risk or have a high risk of developing a genetic illness or disorder. The covenant Genetic information non -discrimination law Prohibits health insurers and employers to ask or discriminate against genetic information in an effort to discriminate against work or medical health insurance decisions. However, it doesn’t protect against long -term care or life insurance.

Many of the warnings from the media and the Attorney General deal with genetic information because they’re only unique for one person. However, Direct-to-Consumer Gentests firms also retain a considerable amount of personal data from the surveys that may complete consumers. Much of this information could possibly be embarrassing in the event that they were by accident or deliberately unveiled, reminiscent of: The intelligence of an individual.

In 2025 book “Careless people“, Sarah Wynn-Williams, the previous Meta-Executive, reported that Facebook would use details about self-reinforcement in regards to the personal appearance, e.g. deleting a selfies to advertise beauty products. If firms know such intimate details a couple of person, they may not only sell products, but in addition for the establishment of promoting.

I feel consumers are right to fret about how their genetic data could possibly be misused. However, the survey data that comprises all possible other personal information are at the very least as much, if not a knowledge protection problem. This applies particularly when the information is Pooled along with other information Available on the Internet, reminiscent of a dating profile, to create a more detailed and more personal picture of an individual.

I delete my very own 23andme data. In the longer term, I’d also warn consumers of free to free the private sector with details about their fears, hopes, restrictions and successes.

This information is useful for more people than simply it.