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I never expected to agree with Josh Hawley on anything... but here I am. Updated. [1]

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Date: 2025-06-14

Link for video: www.msn.com/…

I have been curious about my ancestors for a long time. My paternal grandfather made a claim about his European ancestry that I have always wondered about and it would be fun to know if he was right or wrong. My mother’s side of the family hailed from the Confederate South and there are some questions I’d like to have answered about them, too. It would be interesting to see just how much of a “mutt” I am, and what I have inherited from my ancestors, known and unknown, from far and wide, and from the past before my parents’ parents’ parents’ recollection. Heck, I could maybe even get some medical info out of it that could come in handy.

But I have never had my genetic history traced because … well, first, because I just don’t trust the government (especially the current Federal Administration, that just handed my Social Security info to Elon Musk) not to try to get their grubby hands on the specifics of my genetics and to somehow use it against me. Nor do I trust a for profit entity not to give that singularly personal info to the government when told they had to. (As a clinician I’ve already had to tell clients that HIPAA gives the Feds the right to demand medical records, AND the right to gag me so I couldn’t even tell them the records had been transferred.) AND I don’t trust any corporation not to sell the most personal of information about me for an additional profit over and above what I had paid them if given the opportunity. And, on top of that, I don’t trust ANYONE who would want to buy that information. Call me paranoid if you will; I see lack of trust in this context as a protective necessity.

Now, the CEO of 23andMe was called in to testify to the Senate about their plans to sell, along with their customers’ identifying information, the customers’ genetic information. He mentioned Regeneron (a pharmaceutical company) as one possible purchaser.

Hawley wanted to know how many of the 15,000,000 customers were minors, who couldn’t give consent. CEO didn’t even make an educated guess, and didn’t even promise he would get that info for the Committee.

Hawley asked if customers were promised the genetic info would never be shared without their permission. CEO says yes. Hawley has an aide pull out a big posterboard printed with a page from the company website that shows yes, they were promised that and then asks about the sale of the information. Did the customers agree to that sale? No, but they have complete control over their information and can delete it. “How long does that take?”, Hawley asks. Up to a month, says the CEO, but most often sooner.

Hawley then asks how it’s deleted and is told it’s done on the website. He asks the company guy if they’ve fixed the website because that page went down as soon as news of the plans to sell genetic info hit the papers, because so many customers wanted to delete their information… and is assured that it has been corrected and is working now.

Then the aide brings in another big posterboard. On it is the 23andMe Privacy Policy. Some of it is highlighted. The highlighted parts indicate that no, even if the account is deleted, the company keeps identifying information (name, email address, sex, birthdate, etc.) AND the genetic information.

CEO stutters a bit, keeps replying that it is not so, and Hawley keeps going back to the privacy policy and the way it doesn’t jibe with the promise never to transfer that most personal of information without permission. 23andMe’s lawyer tries to tell CEO what to say, and Hawley shuts that down, (“Don’t listen to the suit behind you, YOU are testifying, not him.”) and pushes some more.

Finally he asks the guy flat out, “Didn’t you just lie to your customers? Because wouldn’t it reduce the price of the sale if the customers could request their info be deleted?” And tells him he hopes the customers “sue the socks off” of the company, and win.

Seriously, I was flabbergasted that Hawley would apparently be on the side of the customers on this one… but not one whit surprised at the lies and profit motive of the company. And I am darn glad I didn’t give in to my curiosity the way 15,000,000 other people have … who now need to trust that Josh Hawley and other Republicans will actually do something to keep their identities/genetic information safe from misuse.

I don’t know what the upshot of all this is going to be, but if you or someone you care about has used the 23andMe service, you/they probably should follow this as closely as you can.

Update: States filing suit to protect consumers’ genetic data:

link to article: patch.com/…

“Joining Pennsylvania in the lawsuit are the attorneys general from Arizona, Colorado, Connecticut, the District of Columbia, Florida, Illinois, Kansas, Kentucky, Louisiana, Maine, Michigan, Minnesota, Missouri, New Hampshire, New Mexico, New York, North Carolina, Oklahoma, Oregon, South Carolina, South Dakota, Utah, Vermont, Virginia, Washington, West Virginia and Wisconsin.”

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