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FTC Says 23andMe Purchaser Must Uphold Existing Privacy Policy For Data Handling (therecord.media) 28

The FTC has warned that any buyer of 23andMe must honor the company's current privacy policy, which ensures consumers retain control over their genetic data and can delete it at will. FTC Chair Andrew Ferguson emphasized that such promises must be upheld, given the uniquely sensitive and immutable nature of genetic information. The Record reports: The letter, sent to the DOJ's United States Trustee Program, highlights several assurances 23andMe makes in its privacy policy, including that users are in control of their data and can determine how and for what purposes it is used. The company also gives users the ability to delete their data at will, the letter says, arguing that 23andMe has made "direct representations" to consumers about how it uses, shares and safeguards their personal information, including in the case of bankruptcy.

Pointing to statements that the company's leadership has made asserting that user data should be considered an asset, Ferguson highlighted that 23andMe's privacy statement tells users it does not share their data with insurers, employers, public databases or law enforcement without a court order, search warrant or subpoena. It also promises consumers that it only shares their personal data in cases where it is needed to provide services, Ferguson added. The genetic testing and ancestry company is explicit that its data protection guidelines apply to new entities it may be sold or transferred to, Ferguson said.

FTC Says 23andMe Purchaser Must Uphold Existing Privacy Policy For Data Handling

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  • enforcement (Score:5, Insightful)

    by awwshit ( 6214476 ) on Tuesday April 01, 2025 @05:34PM (#65274835)

    How much longer will there even be an FTC? Not holding my breath for enforcement in the current environment.

    • Re: (Score:1, Offtopic)

      by tlhIngan ( 30335 )

      How much longer will there even be an FTC? Not holding my breath for enforcement in the current environment.

      Not long, wasn't Elon Musk being investigated by the FTC? He's been going through the agencies that have been investigating him or his companies, so I'm surprised there is an FTC to speak of right now.

  • Who will buy it? (Score:3, Interesting)

    by BinBoy ( 164798 ) on Tuesday April 01, 2025 @05:38PM (#65274839) Homepage

    Who will buy all that sweet, sweet private info without the ability to sell it?

    • Too bad, so sad. A contract is a contract, even if the other part cries poor.

      • by Zak3056 ( 69287 )

        Too bad, so sad. A contract is a contract, even if the other part cries poor.

        That's simply not true. When this goes to the bankruptcy court, the court can (and will) remove contractual obligations from the estate.

    • by tlhIngan ( 30335 )

      Who will buy all that sweet, sweet private info without the ability to sell it?/blockquote

      Lots. Companies that deal with LEOs will love to get at this data - they can offer searches of all that genetic data to help find potential suspects in crimes.

      Those companies don't need to sell the data, they just sell a service to scan the data for potential partial matches for a subscription fee.

    • 23andMe already had the ability to sell it, and did so since the beginning.

      Everybody's worried about what a new company can do with the data — and that is a concern — but frankly some of the things that people are worried about, 23andMe already can do or already does.

      https://www.npr.org/2025/03/24... [npr.org]

    • Someone who's really into cheek swabs.
  • Welcome the sweet army of cloned-me overlords they create from my data.
    • That article does say that they only sell the data with customers' consent. On the other hand, thanks to interlinking family trees we all share DNA. And so an organization can spy on you by getting consent from someone else [11alive.com].

      This seems like one of those areas in which true consent isn't possible, and so it should probably just be prohibited outright.
      • How many individuals already gave prior consent? And of course you don't think they really follow their own rules, do you?

        • Plus, you really think they just clean those plates off when you are done at a restaurant? Sample taken. You do not think your garbage is not gone through? Sample taken. Hate to tell you, but we have all already been cataloged.
  • by Smidge204 ( 605297 ) on Tuesday April 01, 2025 @06:35PM (#65274959) Journal

    *Sells data for $100M*

    "Oh sorry, you said to NOT do that?"

    *Pays FTC fine of $1M*

    =Smidge=
    /If it's punishable by a fine, it's legal for a price

    • by mjwx ( 966435 )

      *Sells data for $100M*

      "Oh sorry, you said to NOT do that?"

      *Pays FTC fine of $1M*

      =Smidge=
      /If it's punishable by a fine, it's legal for a price

      And remember, it's only a fine if you get caught.

  • Dear 23andMe user, We have updated the terms of our user agreement for your data. If you wish to opt out please email us a hard copy of your original birth certificate, your political voting record for the last 4 elections, and the last 3 million digits of your DNA base pairs. Sincerely, The Wesayso corporation.
  • The policy that says they may change it at any point in time, for any reason, without prior notice, as long as they tell you after the fact, or post a notice on their website.

  • I am willing to bet that the new owner will break that rule. Just like the AI companies are hovering up data and crying ... but they need it. If you or I did it ==Jail time. Company does it and they just pay a small fine.

C'est magnifique, mais ce n'est pas l'Informatique. -- Bosquet [on seeing the IBM 4341]

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