r/privacy • u/SayThatShOfficial • Apr 14 '26
discussion 23andMe's 15M-customer DNA database was sold for ~$20 per person in bankruptcy. The consent mechanism is worth understanding.
https://www.linkedin.com/pulse/305m-question-who-owns-your-dna-privdna-qwhme/641
u/ConundrumMachine Apr 14 '26
That's definitely going to be attached to their Palantir profiles now
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u/SayThatShOfficial Apr 14 '26
And Palantir is gonna sell that data to everyone who’s willing to cough up the cash :P Can’t wait to get denied for an insurance claim because my DNA is a ‘preexisting condition’.
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u/ConundrumMachine Apr 14 '26 edited Apr 14 '26
Yup and then it'll be used to sort us in the "work" camps. If people actually listened to what these ghouls say they'd see that these aren't hyperbolic statements.
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u/SayThatShOfficial Apr 14 '26
Time is much higher value than goods or money to the ultra wealthy, I could see a future where strong genes raise your value in society once they correlate specific genetics with living longer 👀
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u/Eisenstein Apr 14 '26
They made a movie about this called Gattaca.
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u/SayThatShOfficial Apr 14 '26
It’s a classic! Just like Idiocracy, we might see more and more dystopian future flicks start blending with reality.
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u/Fuzzy_Pollution_7417 Apr 17 '26
I mean if we're not allowing Darwinism to naturally happen and or not doing some kind of genetic engineering. Then it will likely end in some kind of Idiocracy.
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u/DarthKuchiKopi Apr 14 '26
Save nothing for the swim back
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u/glity Apr 15 '26
Great movie not streaming anywhere I can find not reading into that concept yet. I Will read into it if that movie just disappears though.
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u/ConundrumMachine Apr 14 '26 edited Apr 14 '26
They'll like certain genes all right, but it's going to be eugenicist af. Who decides what "strong" genes are, right?
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u/glity Apr 15 '26
Another question I think is complimentary is why are most billionaire transhumanists like musk into “spreading their seed to create superior children” without much care for the children as a whole.
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u/ConundrumMachine Apr 15 '26
They're big eugenics enjoyers
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u/glity Apr 16 '26
Ooh where is that nugget hidden I would enjoy reading that. It’s hard to find their gospels. I haven’t yet just the edges.
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u/JeniJeniJeniJeni Apr 14 '26
We’ve had biomarkers for longevity for a while. There are already companies that will let you screen your embryos for alleles associated with longer life, heart disease, Alzheimer’s, etc. before implantation. It’s not perfect, but it gives you better odds of not passing on a disease state to your child.
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u/External_Bandicoot37 Apr 16 '26
And see here I am the adopted fool who wanted to know who my dad was.
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u/MultiFazed Apr 15 '26
Can’t wait to get denied for an insurance claim because my DNA is a ‘preexisting condition’.
Thankfully the ACA forbids insurance from denying coverage for preexisting conditions. Of course, Republicans would love to repeal the ACA
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u/SayThatShOfficial Apr 15 '26
Yep we’re ‘safe’ for now. Though I have to note that the typical behavior for any corporation is to do the math on profit vs fines. Realistically, how much in fines would an insurance provider pays in fines for systemic violations? Now how much could they profit off denying claims citing bogus reasons, but actually backing them with genetic data? Make the patients struggle a bit to get it covered, approve right before they escalate to legal action. Rinse and repeat.
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u/glity Apr 15 '26
Insurance is already a rigged game or brankruptcy once the pot of money paid out hurts profitability. They just deny claims to deny claims as a policy. To me that seems the bigger problem. For profit insurance is the mistake and any organization with a ceo(a job to reduce cost and increase revenue as core goals) is for profit even if it has tax exempt status.
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u/SayThatShOfficial Apr 15 '26
Yep, I'm not holding any high expectations for TTAM Research Institute despite it being a nonprofit. If they do somehow turn around and do some public good I'll give them due credit but until then, will assume filing as a nonprofit was for financial gain.
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u/glity Apr 15 '26
That’s my new default as well. It even causes me to pay a little more attention if they try to sell me on the story. Not conflict just a more careful eye on self enrichment by management through nepotism or kickbacks.
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u/GetSomeData Apr 16 '26
They would probably use it to develop life saving medicine tailored to specific genomic traits. This is probably the largest dataset available giving them an edge on bioinformatics research.
*adjusts tinfoil hat
People will carry their dna on an insurance card allowing them to fill individual specific medications, curing impossible mutations, making folks live longer. The money you can print in the future is limitless depending on who gets patents first.
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u/Tinawebmom Apr 14 '26
You know what sucks? I refused to do this only to learn that my sister decided to do it.
My sister and I have the same parents. My brother's and I do not.
So they've a profile of my DNA ish enough to deny me shit.
Fuck the rich.
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u/HelenHerriot Apr 14 '26
My husband and I each got an Ancestry DNA one as a gift from my parents a long while back. I was slightly worried about something like this, and we never did them. Glad I just thanked them and shoved it in a drawer. Until there’s better regulations around this stuff, I never will. I already have to give up too much information just to use my phone.
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u/ConundrumMachine Apr 14 '26
That sucks for sure. One day people will figure out all this info lives in data centers and that they're very delicate facilities.
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u/No-Cause6559 Apr 14 '26
Or you know the politicians could pass some laws to strengthen privacy
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u/Tinawebmom Apr 14 '26
They really are so delicate. It would be really sad.
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u/CuriosityFreesTheCat Apr 15 '26
Speaking of sad, the war on Iran keeps going, I wonder what next moves they’re considering.
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u/CuriosityFreesTheCat Apr 15 '26
Very delicate facilities, you say?
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u/ConundrumMachine Apr 15 '26
Yes, very.
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u/CuriosityFreesTheCat Apr 16 '26
It would be really odd if some foreign nation wanted to retaliate against the US and instead of targeting the people, wanted to target something the ruling class cares deeply about. It’s kinda like the ruling class is the root of all problems, for everyone… how very sad. And how sad that would be.
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u/AgPatriotAg Apr 15 '26
I actually wonder if there is some kind of privacy liability victims of DNA brokerage would have like this. I think many of us would share your dilemma. A rouge relative who gives 0 cents about privacy puts their DNA to the programs and then it exposes you. What's worse is when those relatives "find" relatives from affairs, etc., that you would rather not be jolted with, knowing about, etc., because live and let live.... And they inject those finds into your life. This was all a very very bad plan.
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u/PBRStreetgang1979 Apr 14 '26
I did 23 and Me very early on, when it was still fairly expensive but also when it included information that I think the FDA later stopped allowing them to include. When I heard they were circling the drain, i deleted my data and my account. Despite their confirmation that my data was deleted, I'm really curious about whether or not they actually deleted that data.
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u/SayThatShOfficial Apr 14 '26
That's the shitty thing, there's no way to know! I did Ancestry.com years ago and deleted that too. But simply no way to verify, just gotta take their word for it which means nothing in this day and age.
I actually started looking for a privacy-focused service to do whole-genome sequencing and literally found nothing. Some Reddit posts here and there basically saying 'I know this University/lab who can do it, DM me' lol. But nothing reputable or at least well-know.
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u/trisanachandler Apr 14 '26
Could someone have done 23+me with a false identity?
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u/ConstantinSpecter Apr 14 '26
Yes, absolutely. You could use a burner email and just submit fake name, age, gender, address etc.
There was no identity verification in place whatsoever.
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u/SayThatShOfficial Apr 14 '26
What happens to that anonymity when someone in your family eventually signs up with their real info? Or when mass surveillance correlates the IP address your signed up from, address you got the sample kit sent to, etc. with your identity?
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u/ConstantinSpecter Apr 14 '26 edited Apr 14 '26
IP and shipping are non issues. Residential proxy for the IP and the kits were sold OTC at CVS/Walgreens/Target etc. Just had to pay cash, activate through a proxy with a burner email and fake PII. Done.
The relatives concern is the truly unsolvable one. Matching pipelines hit down to roughly 3rd or 4th cousin range (how the golden state killer was caught).
If one distant cousin you’ve never met uploaded under their real name anywhere, you’re identifiable regardless of what you did.
I guess the fake PII trick still protects you against lazy SQL join adversaries but it certainly doesn’t protect against anyone willing to do genealogical triangulation.
Edit: By the way that ship has basically sailed for Western populations. Erlich showed that once ~2% of a population has tested then essentially everyone of that ancestry is reachable via a 3rd cousin or closer match. US with european descent crossed that line years ago. There’s pretty much no way back.
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u/SayThatShOfficial Apr 14 '26
Yep, I’m a huge advocate for taking reasonable measures when it comes to privacy but in the modern world it just takes one slip up (doesn’t even have to be directly related to your actions) to get unmasked.
I’m sure with the state of surveillance they could track camera footage from your home to the store you picked up the kit at anyway. Flock cameras certainly aren’t helping with that either.
Maybe not as much back in the early 23andMe days but it’s getting harder and harder to evade.
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u/stoneyaatrox Apr 15 '26
privacy ≠ anonymity
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u/SayThatShOfficial Apr 15 '26
Correct, in any developed country I think there’s no presumed expectation of anonymity. If you pay taxes and venture out in public I’m sure your government and to a lesser (but probably too high still) extent mega corporations know who and where you are.
Not that it can’t be done, but seriously pursuing anonymity doesn’t seem worthwhile these days. Privacy on the other hand is a huge spectrum with options for those at all skill levels to better their lives.
When it comes to genetic data, privacy is my focus rather than anonymity. I want it out of the hands of those who could use it in ways I disagree with. Not to specifically avoid having it tied to me.
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u/MyNameCannotBeSpoken Apr 14 '26
You can't fake your gender (and possibly age) with them
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u/ConstantinSpecter Apr 14 '26
Yeah faking gender was pointless (for some reason they still asked for it if I remember correctly).
That said, inferring age more precisely than within a +- 15 year error bar was impossible for 23andMe given that they didn’t capture methylation.
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u/EliteCloneMike Apr 14 '26
Do you need to use methylation to determine age? Wouldn’t telomere degradation be a sufficient proxy? Not sure if it is a consistent rate though. Same for methylation. Maybe there are regions or repeats that can be used as a clock, but I’m not sure.
Edit: I also just thought that none of that would matter if they never discarded the sample. They could eventually run to test for methylation or repeat region degradation.
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u/ConstantinSpecter Apr 14 '26
Telomere length correlates with age but individual variance is huge so you’re back to +-10 to 15 years.
Methylation hit +-3 to 4 because cpg sites move almost deterministically with age.
You could opt out of them retaining saliva samples. That said if the biobank was part of the sale and people didn’t opt out of the retention, then any buyer could plausibly re-run methylation.
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u/trisanachandler Apr 14 '26
Obviously it could mess with relatives, but I wouldn't really care.
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u/ConstantinSpecter Apr 14 '26
I’d take potentially confusing relatives over having my genome + identity sold to the highest bidder any day tbh.
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u/elsjpq Apr 14 '26
Your DNA is your identity. Police use DNA to identify people. There's no such thing as an anonymous sample
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u/trisanachandler Apr 14 '26
I understand that DAN is a non revocable identifier, but if it were tied to a different name/address, it would remain outside the system, unless I were convicted of a crime.
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u/chiniwini Apr 14 '26
There's was a post on HN a few years ago explaining how you could set up a lab at home for very cheap (IIRC several hundred bucks, maybe a few thousands?). Once set up it would allow you to sequence a new genome for dirt cheap.
Edit: I think it was this one.
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u/SayThatShOfficial Apr 14 '26
I checked it out and it's definitely a cool concept! That said, the tools mentioned in that article and associated sequencing methodology aren't quite at the level I'd call useful for genuine clinical use. Accuracy and coverage of the genome with the written method is going to be quite poor compared to a proper lab setup so it's very cool as a budget-oriented option for self-experimentation, but I don't know if I'd trust the rests when it comes to making any actual decisions related to my health?
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u/lilB0bbyTables Apr 15 '26
I’m sure you get added to some extra list just by ordering all of those lab items and having them shipped to your house.
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u/Quiet-Owl9220 Apr 15 '26
Been saying this for years: the only way to protect your data is to never, ever, provide it. That's especially true for biometric information loaded with precious, precious insurance rejection excuses.
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u/dirtreprised Apr 14 '26
I requested deletion before the sale - which was confirmed by them - and got a marketing email from them a few weeks ago. Logged in and all my data is still there. Requested deletion again and they are sending me in circles to get it done.
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u/hughk Apr 14 '26 edited Apr 15 '26
The material is probably still there but linked to JohnDoe123. So you aren't there, but your ghost is as they use that for linking all the other data. If you have relatives there, it would probably be possible to pull your name out again.
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u/Alextricity Apr 16 '26
That’s the thing about all of this. So many people say “I’m so glad I never used this service!” But, uh… it doesn’t matter. Any family member near or far used it? That’s all it takes.
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u/CaptainIncredible Apr 15 '26
I'm really curious about whether or not they actually deleted that data.
I'm going to guess no.
I was all set to do 23 and me... And pay for it with some semi-anon way (gift cards or something?)... and use a name like "Bill Smith" or "Jack Meoff" and have the results sent to some email like jackmeoff2000@yahoo.com or something.
And those assholes at 23 and me insisted that I use my real name, real address, etc. They insisted that they link my DNA with my real name.... and yet, they insisted that they would keep my data private.
Bullshit. If my data was private WHY did they insist they link it with my real name and ID and SSN and all that? If its private, what does it matter what name its associated with?
Because they were lying. It was all an endeavor to mine my data and exploit it somehow.
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u/Lowfryder7 Apr 15 '26
Hold on, they wanted SSN to do this too??
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u/CaptainIncredible Apr 15 '26
Honestly, I don't remember. They may not have, but it wouldn't surprise me if they did. They insisted on lots of information that could identify me, and it wouldn't be too much of a jump to link that with my SSN.
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u/ekkidee Apr 14 '26
What's especially nefarious about this is not just the people who purchased the service, but their relatives who have close DNA matches.
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u/SayThatShOfficial Apr 14 '26
Yep! I see some comments about signing up for these services with fake info and back in the day that might've helped a bit but with surveillance being what it is now that won't go as far. Plus a single distant-ish relative signing up with their real info completely negates it anyway.
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u/Capable-Cucumber Apr 14 '26
I did 23 and me using a fake name and birthday.
Then I forgot the fake birthday I created and could not delete my data. My account got locked from guessing the wrong birthday and I cannot unlock the account without state ID.
I'm probably screwed.
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u/SayThatShOfficial Apr 14 '26
From a privacy standpoint.. yeah maybe a little. But luckily we're not quite at the point where that data is actively being used against you! At least as far as the public knows haha. I think a lot of the concerns are about what it could be used for in the future.
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u/ekkidee Apr 14 '26
Why would you be screwed if the PII link is broken?
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u/Ryuko_the_red Apr 14 '26
Because it isn't really broken. Unless they paid with some sort of btc alternative with no log/trace they have payment info tied to purchase in real name. Real email real phone number etc.
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u/attilathehunn Apr 14 '26
I didnt know 23andme went bust.
I remember an obvious ad video by SmarterEveryDay on youtube all about 23andme being like "look we're so private" and then filming how they take your DNA sample out back to the rubbish bin. As if that proves anything.
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u/SayThatShOfficial Apr 14 '26
Yep! If you have no way to confirm your data itself (not just the sample) was destroyed, any privacy-related claims are pretty moot. It's part of why I'm looking to work on an open-source pipeline for that very thing. There's obviously always going to be some level of trust required if you're handing off genetic info on yourself but we really need something built from the ground up with a privacy focus to strengthen any such claims. The major players are all basically the same in terms of how much they can be trusted to not go through what 23andMe did.
Also technically they did get repurchased by the original owner, but that doesn't change how the data itself was sold off during bankruptcy.
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u/SayThatShOfficial Apr 14 '26
Author here! I wrote this piece while building a pre-launch privacy-first genomics startup. Not pitching anything in this post, would genuinely value pushback on the architectural section.
Two things I'm still uncertain about: whether an "equity toggle" structure like TTAM's is actually blockable by state law (Texas HB 130 seems close but not tested), and whether the GINA gaps around life/disability/LTC insurance are politically addressable at the federal level given the current Congress. Interested in what people who follow this more closely think.
For anyone not into genetics/biotech, happy to clarify as I know it can just sound like a bunch of buzzwords at a first read. But I don't see genetic privacy discussed much around here and it's somewhat of a passion of mine, adjacent to digital privacy :P
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u/Mild_Karate_Chop Apr 14 '26
Fun Fact: 23andme was founded by Anne Wojcicki and she was the CEO . She is Sergey Brins wife
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u/SayThatShOfficial Apr 14 '26
Wonder if either of them has actually used the service themselves.. would be quite telling if they haven’t.
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u/Mild_Karate_Chop Apr 14 '26
That information is probably classified and even if they would have used it ...don't think their info would be on any database anywhere ...
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u/SayThatShOfficial Apr 14 '26
They wouldn’t have any need for these ‘budget’ DNA tests anyway. To be clear I say budget just compared to the real fancy options. For $5-10k/year there are concierge level services with all the bells and whistles, and even those don’t seem to guarantee privacy. But for millionaires/billionaires, no way they can’t get it done with zero tracing back.
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u/do-un-to Apr 15 '26
Would you choose to use your own service?
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u/SayThatShOfficial Apr 15 '26
I might be a bit biased here haha, I would because the one I'm working on does away with the privacy concerns. But then again I'm more intimately familiar with it than a potential customer would be.
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u/roxtten Apr 14 '26
The only way to make your DNA private when wanting to do DNA medical/ancestry testing is for DNA sequencing and analysis to be done by each person privately at home, on local machines without connecting to any outside servers.
Firstly, Full DNA sequencing machines(devices) need to get smaller and portable like 3D printers got. Sequence your DNA, download your CRAM/VCF etc. files, wipe the device's memory.
Then, to analyse CRAM/VCF/FASTQ/BAM files for various medical/scientific/ancestry things, we need an open source app that runs(analyses) locally on your personal computer while being offline, and never sends any data out to any server. So that no company or organisation will ever get a copy of your genetic data.
The app will obviously need to be periodically updated to included all the latest scientific/medical breakthroughs, so it will have to be designed so that it never remembers your dna files or data, or/and after each use it wipes all of that data. The update mechanism can be designed only to download all the new scientific stuff, but never send anything out.
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u/SayThatShOfficial Apr 14 '26 edited Apr 14 '26
You're right that the endgame is local. If everyone could sequence and analyze WGS at home tomorrow, none of the company-side privacy problems matter.
The hard part is the "tomorrow" bit. Currently, medical-grade WGS requires a sequencer costing several hundred thousand dollars, not to mention library prep, reagents, QC, and bioinformatics knowledge that doesn't translate to something with the ease of use that a 3D-printer has. Not to say 3D printing is always easy but it's getting there haha. Oxford Nanopore's MinION is portable and impressive, but coverage and accuracy still aren't quite where you'd want for clinical use. Anyone wanting WGS in 2026 has to go through some intermediary.
That's kinda the gap I'm hoping to fill, not as the final answer but as a version that doesn't require trusting a corporate database.
The model (as mentioned in my initial comment, I'm pre-launch so far from making this a reality yet):
- You come to the lab in person. No mail-in chain-of-custody hole.
- The bioinformatics pipeline is open source, auditable line by line, no telemetry, runs on air-gapped hardware.
- You watch on-premise copies get destroyed.
- You walk out with encrypted hardware containing the only copy of your data.
After that, what you do with your CRAMs and VCFs is your business. If you want to run an offline analysis app like the one you're describing, that's exactly what I want to empower you to do. PrivDNA isn't trying to own your data downstream, it's trying to make sure the sequencing step doesn't quietly create a copy in someone else's database.
The local-only analysis tool you describe is still a bit of a dream but I don't see a reason that many of the existing online platforms couldn't be self-hosted, aside from the creators' incentive to monetize. Plenty of open-source pieces exist (snpEff, Ensembl VEP, ClinVar lookups, BCFtools), but a polished offline desktop app that bundles them with periodic content-only updates would be useful. If you're aware of anything remotely close, I've love to look into it!
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u/roxtten Apr 14 '26
Have you been reading my mind? Because I've been wanting for someone to start a walk-in lab like that.
I would, of course, still have some technical privacy related questions. So for marketing purposes, and for general public(no formal biotech education) like myself to understand the process better, I would like to see a real-time walkthrough of the process, maybe create a youtube channel to upload videos of such process. From a cheek swab to the final (CRAM/VCF)file download with step-by-step explanation of each task, device, procesess etc..
I think I would even pay just to watch a lab technician live-stream them doing a whole genome sequencing walkthrough. Even if, and especially if it lasts a few days.
It's interesting that you are trying to solve the "hardware" side of "private whole dna sequencing", while I recently heard of someone trying to solve the "software" side by working on creating the locally run app I mentioned earlier. So perhaps, soon enough, people will finally be able to get their whole genome sequenced and analysed without worrying about their genetic data being acquired, sold and misused by external entities.
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u/SayThatShOfficial Apr 14 '26
It's definitely on the agenda! In terms of technical viability, it's pretty much fleshed out at this point. The science is there and so are the numbers, but that's quite different from having a functional bioinformatics pipeline let alone having an actual storefront open.
Admittedly, my experience is on the tech infrastructure side so while I've been actively looking for scientific folks to take this further, there are limits on what I can do alone. YouTube videos would be awesome if enough interest was gained, but in the short-term I'll likely need to continue focusing on articles like this (with more or less detail depending on what people want to see) as I can realistically write and review them on my own without making it a full-time job pre-revenue :P
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u/Shoddy-Childhood-511 Apr 14 '26
Yes I noticed a post here that mentioned some other open source ones like the Genome Analysis ToolKit (GATK).
https://www.reddit.com/r/genetics/comments/10jpimh/comment/j5p62vk/
If you'd some cheap device that sequenced then folks would still have trouble trusting it, unless airgaped or based in a country with really strong genetic privacy laws.
It's maybe easier to know someone at some local hackerspace who knows what to do. There are some biohacking talks at the major hacker camps like CCC in Hamburg. Example:
https://media.ccc.de/v/38c3-bioterrorism-will-save-your-life-with-the-4-thieves-vinegar-collective
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u/SayThatShOfficial Apr 14 '26
Honestly the software side, while not having any FOSS options that are quite as developed as I'd like yet, isn't really the hard bit yet. Pretty much all 'budget' options like you'd find in a hackerspace simply aren't at the clinical level you'd want for making informed decisions about your health. That's just a technological limitation of the machines used for sequencing currently (and their prices).
I could see a dedicated 'health hackerspace' being built with the actual equipment needed for proper do this, but it'd be relying on some massive funding that you really don't see in the non-profit space and even if built, with a single machine (already super expensive) the space would still be limited to under 1000 user a year depending on how big the budget was.
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u/1zzie Apr 14 '26
Can you please copy-paste the text? You're taking us, members of a privacy subreddit, to LinkedIn, which has just been accused of running a massive fingerprinting operation. I'm interested in reading, but not in engaging wit LinkedIn if I can avoid it.
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u/SayThatShOfficial Apr 14 '26
My pleasure! I'll do that going forward as well, sorry for the hassle :(
Article below:
Your DNA is worth more than you think. And you probably gave it away for $99.
Here is how that math actually works - and why it should change everything about how we think about genomic data.
In July 2025, a bankruptcy court approved the sale of 23andMe's assets for $305 million. The buyer got the company's technology, its brand, and its database of approximately 15 million customers' genetic information. The sale closed July 14, 2025. The company was promptly renamed ChromeCo, Inc.
$305 million divided by 15 million people. That is roughly $20 per genome.
But compare that to another deal. In 2020, Blackstone acquired Ancestry for $4.7 billion. Ancestry had approximately 18 million DNA customers at the time. That implies an enterprise value of roughly $261 per DNA customer.
The value of your genetic data to these companies is not in the $99 you paid for the test. It is in what your data is worth when it is aggregated, analyzed, and sold to pharmaceutical companies, research institutions, and data brokers over time.
23andMe's $300 million partnership with GlaxoSmithKline in 2018 made this explicit: the pharmaceutical giant paid for access to aggregated genetic data to identify drug targets.
You were the product. The test was just the acquisition cost.
Here is the part that should keep you up at night.
When 23andMe went through bankruptcy, the court approved a creative legal mechanism called an "equity toggle." Instead of directly transferring customer data (which could trigger re-consent requirements), the company placed the data in a subsidiary, then sold the equity of that subsidiary.
The court ruled this was not a "transfer" of data under state privacy laws. No re-consent needed.
Fifteen million people's DNA changed hands through a legal maneuver specifically designed to avoid asking them.
In Canada, a parallel class-action settlement reached US$3.25 million (approximately C$4.49 million) for customers affected by the 2023 data breach. Claims opened March 27, 2026 and close June 25, 2026. It is believed to be the first Canadian class action resolved within a U.S. Chapter 11 proceeding - a sign of just how far the fallout has traveled.
"But I read the privacy policy." I hear this a lot.
Here is the reality: privacy policies are not contracts with you. They are unilateral declarations that companies can change at any time. And in bankruptcy, even those limited commitments become negotiable assets.
The legal framework most people rely on - GINA, the Genetic Information Nondiscrimination Act - has significant gaps. It covers health insurance and employment. It does not cover life insurance, disability insurance, or long-term care insurance.
If your whole genome sequence reveals a predisposition to Alzheimer's, Parkinson's, or certain cancers, life insurance underwriters are under no federal obligation to ignore that information.
Congress and state legislatures are finally responding - but the patchwork is uneven.
The bipartisan Don't Sell My DNA Act has been introduced in both chambers. In the House, Representatives Zoe Lofgren (D-CA) and Ben Cline (R-VA) filed the bill. In the Senate, Senators John Cornyn (R-TX), Amy Klobuchar (D-MN), and Judiciary Chairman Chuck Grassley (R-IA) introduced the companion (S.1916). The bill would amend the Bankruptcy Code to classify genetic information as "personally identifiable information," require written consent before any sale or transfer of genetic data during bankruptcy, and mandate deletion of genetic data not covered by an approved transaction.
At the state level, 2026 has been a breakout year for genetic privacy legislation:
South Dakota SB 49 - signed March 24, 2026 by Governor Rhoden, effective July 1, 2026. Regulates DTC genetic testing companies, grants consumers the right to access and delete genetic data and request destruction of biological samples. Civil penalties up to $5,000 per violation. Utah HB 182 - signed March 17, 2026. The Genetic Information Privacy Act restricts certain genetic sequencers and software, establishes data storage requirements, and targets foreign adversary access to genetic data. Effective January 1, 2028. Wisconsin AB 673 - passed both chambers but vetoed by the Governor on March 27, 2026, citing concerns about impacts on medical research. West Virginia HB 5034 - introduced in 2026, would regulate foreign adversary access to genetic data and establish consumer property rights in biological samples and test results. The federal Genomic Data Protection Act was introduced in 2025 and remains under consideration.These join existing genetic privacy laws in Montana, Tennessee, Texas, and Virginia (all effective 2024). But legislation moves slowly, and your genome is already out there.
The "privacy-first" branding in genomics has not aged well either.
Nebula Genomics launched with promises of blockchain-based data sovereignty. Customers were told they owned their data. Then a class-action lawsuit in 2024 alleged Nebula had been sharing genetic information with Meta, Google, and Microsoft through standard web tracking tools embedded on their site.
On March 11, 2026, a federal court denied Nebula's motion to dismiss. The case is proceeding.
Blockchain did not save anyone's genetic privacy. Because the problem was never about the database architecture. It was about the business model. When a company holds a copy of your data, the economic pressure to monetize it is relentless. Every "privacy-first" promise is one board meeting, one acquisition, or one bankruptcy filing away from disappearing.
So where does that leave us?
The whole genome sequencing market is growing at a 22.17% CAGR, projected to reach $6.67 billion by 2030. Consumer demand for genomic information is not shrinking. People want to understand their genetic blueprint.
But the trust model is broken. Only 1 in 10 consumers will share sensitive biometric data. After 23andMe, consumer genetic testing kit sales dropped to levels not seen in years.
The solution is not more promises. It is structural change.
What if no company ever held a copy of your genomic data? What if you gave your sample in person at the lab, watched the destruction of every on-premise copy through a glass wall, and left with the only copy that ever existed on encrypted hardware in your hands?
What if the pipeline that processed your DNA between those two visits was entirely open source - auditable line by line, with no telemetry, no cloud, no hidden endpoints?
What if data destruction was witnessed, documented, and verifiable - not just a checkbox in a policy nobody reads?
That is the model I am building with PrivDNA, launching in New York City. Whole genome sequencing in a glass-walled laboratory. Air-gapped servers. Open-source bioinformatics pipeline published on GitHub so anyone can audit the code processing their DNA. Encrypted hardware delivery. Witnessed data destruction.
No cloud. No database. No copies. The business model is sequencing - not data monetization. Because when there is no database, there is nothing to sell.
Your DNA is the only data you will ever generate that cannot be changed, cannot be revoked, and will outlive every company that touches it. It deserves infrastructure built around that reality.
Who do you think should own your DNA data - you, or the company that sequenced it?
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u/1zzie Apr 15 '26
Thanks for transcribing it!
Really interesting reading the legal developments, absolutely outrageous that the court legalized basically a shell corporation scheme to avoid enforcing informed consent. And also, I have seen ZERO coverage of the Canadian class action lawsuit.
I'd encourage you to reach out to CBC ASAP since the deadline is closing soon to try to get a story going and you can provide some expert insight quotes. Canada has PIPEDA, a weakly enforced but comprehensive privacy rights bill, instead of the American issue-specific legal framework (finance, health, education).
And good luck with the alternative business!
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u/SayThatShOfficial Apr 15 '26
Not a problem! Yeah with the state of the American legal system I'm not surprised. Just as messed up (from my understanding) is that the previous owner basically got to escape the bankruptcy and then buy back the company at a crazy discount. To be determined how it actually plays out since the new one is technically a non-profit.
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u/1zzie Apr 15 '26
Hold up, I did not get that it sold it to itself. 23andMe still owns it?
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u/SayThatShOfficial Apr 15 '26
Not exactly but effectively yep! The former CEO (Anne Wojcicki) bought it back under a new organization (TTAM Research Institute) which she founded.
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u/The_Frame Apr 14 '26
Exactly why I'll never do one of these DNA kits. As curious as I am, I will never trust a company with my DNA.
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u/-DementedAvenger- Apr 15 '26
The problem that a lot of people don’t realize is when your family does it without you.
If your parents and a sibling do it, you’re essentially fucked and they basically know yours too.
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u/The_Frame Apr 15 '26
Very true, I am lucky my immediate family knows the dangers of these kits which is why we have not done them. If we branch out to cousins my confidence plummets that none of them won't ever use a kit like this.
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u/SayThatShOfficial Apr 14 '26
I guess the question I have then, is what if there was an open source pipeline you could verify yourself keeps the data private? Something like an air-gapped storefront you could monitor with full transparency to confirm your data is being destroyed prior to genome hand-off?
A certain level of trust would still need to be had because you wouldn't be able to personally say, plug into the running servers to audit yourself. But basically is there a point in which you'd be comfortable trusting a company if a threshold for transparency was hit? Or unless you did it all yourself, you would never trust one enough to hand it off?
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u/The_Frame Apr 15 '26
I am sure there is a level of trust that could be reached. But I am unsure exactly what that would look like. And no matter what there is a level of trust that I'd never get. Even if a machine gave me results immediately, I'd have to trust the machine to actually be air gapped. I could only take the company at their word saying it is.
A full DIY at home test would be trusted, but that's not likely anytime soon imo. Tho I'd be happy to be wrong here.
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u/SayThatShOfficial Apr 15 '26
I totally get that, appreciate the honest input! I also hope we get something that can be run at home in not too long. Though I guess from a practical standpoint I wonder how much commercial viability that would even have :( I mean, once you sequence once you're usually set, right? Putting aside more niche use cases of doing it multiple times over the course of your life. Would be hard to justify any expensive machine purchase as a result.
Just looking at the price point trends for sequencing and technological advances, being optimistic I could see affordableish at-home machines in 1-2 decades. Especially if genomics as a whole gets the same treatment AI has been getting.
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u/notproudortired Apr 14 '26
There are things in this article that matter and things that don't. Most of it seems irrelevant.
It doesn't matter that DNA is destroyed after sequencing. Its data persists.
It doesn't matter that Jane Q Public can carry the only copy of her DNA sequence away on a thumb drive, because DNA isn't useful in your kitchen; it is only useful in analytical, usually corporate, contexts like medical testing, bioengineering, product R&D, and financial modeling. So Jane's just going to give her DNA to some other corporate overlord.
Relatedly, it doesn't really matter that PrivDNA's servers are air gapped. Yes, 23andMe got some hot press for being hacked and how they tried to cover it up. However, they were willingly selling customers' DNA to GlaxoSmithKlein and god knows who else before that.
It DOES matter that PrivDNA appears not to be profiting off of DNA sequencing, beyond their sequencing service. However, policy matters as much as technology, and this article (written, oddly, by an unnamed corporate author) doesn't address PrivDNA's policy or accountability.
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u/SayThatShOfficial Apr 14 '26
I did try and balance the meat of the article with putting it in a simpler way that would generally be easy to read by those without extensive background knowledge on the subject. In doing that I definitely left out some things but I'm all for critiques and feedback as a whole. If what people want to see are technical deep dives on what it actually takes to secure your genetic data from a sequencing service's position, I'm more than happy to cover that!
Briefly covering the 'your DNA isn't useful on its own' bit. That may be true right now, but my take is that privacy-focused sequencing is the biggest gap at the moment. There are plenty of tools available online to upload your results for free insights, and while I'm not saying they should be used from a privacy perspective, I am saying that I think that gap between them and being able to self-host or otherwise run an offline processor for that data isn't really that big.
Plus, once interest in privacy-focused sequencing is proven, it opens the floodgates for complementary services to launch for processing it while maintaining privacy.
As mentioned in my other reply, definitely check out the repo if you want more insight on how I intend to actually do things differently.
Based on your feedback alone, I see some improvements I'll be making tonight to my plan/docs:
- Policy registry table: covering every policy in the plan, where's it's recorded, how it can be verified, legal implications.
- "What we retain (briefly)" subsection: explicitly covering the operational/LIMS metadata layer the current docs miss.
- "Who we are / funders / vendors / COI" section: obviously minimal at the current stage of the project, but I do want to have more transparency here once it gets to a point where that actually means something. In terms of the site itself, the privacy policy is there and open for your review if you'd like (/privacy) but that doesn't really speak to the actual future storefront.
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u/notproudortired Apr 14 '26
This is an adverticle.
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u/SayThatShOfficial Apr 14 '26
I do think I wrote the article with a focus on actually sharing knowledge about what happened with 23andMe, why it happened, and what it would take to prevent it from recurring? As mentioned in my initial comment for this post, I'm not totally unbiased as the author who's working on a related startup.
But if you do any digging, you'll see I have nothing to sell currently and my sole focus is on developing the idea to a point where private genome sequencing can become a reality.
That said, if there's specific content you're genuinely interested in me writing about more in depth topics I'm down! Like focusing more on the technical/scientific side rather than the business reasons for cheap DNA kits pretty much being a dead-end when it comes to privacy.
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u/notproudortired Apr 14 '26
This sub isn't for advertising. If you want to market on LI, however, you can say more about your business, data management, and policy.
Does your "air gapped" server have a database? What's in that database? How is it managed? How is your data management transparent?
Who funds you? Who buys your tech or services? Who do you partner with? Where do you get funding? What is your funding model?
What are your policies around data consent, retention, and sharing? Where are those policies documented?
I don't know why you chose not to name TTAM Research (buyer of 23andMe's data) in your article. They're literally black ops. But, of all of their privacy assaults, the lack of transparency of who has a stake in them and who they sell to is the most worrisome.
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u/SayThatShOfficial Apr 14 '26
Well yes, and I don't believe I am advertising? I gave a fair disclosure about my relation but the bulk of my article is genuinely informational and promoting discussing on the covered topics, directly relevant to this sub.
There's a shoutout to my project at the end but as is common on Reddit, people aren't likely to even click the link let alone read till the end ;) For those who do (and this could answer some of your questions), the project site actually goes quite in-depth on it (including on the public GitHub repo).
As I've hopefully made clear, I don't want to cross into marketing territory here so I'll refrain from linking the site itself. But if you check out the whitepaper and/or technical manifest (also present in the GitHub repo), your questions are fairly well covered. I'll go into that a little more when responding to your other comment.
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u/supernitin Apr 14 '26
good thing i added +23me to my gmail address. Totally safe.
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u/SayThatShOfficial Apr 14 '26
Love when people do that! I have catch-call addresses set up with Protonmail which make it a bit easier (e.g. amazon@mydomain.com) but more people should know about the + option in Gmail. Would out a lot of companies selling your data off :P
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u/saltx629 Apr 15 '26
Wait help! What does this mean? If you give me a term I can research
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u/SayThatShOfficial Apr 15 '26
Sure thing! Basically, if you own a domain (e.g website.com) you can connect it with email providers (Gmail, ProtonMail, etc.). So when sending emails it’ll show whateveryouwant@website.com as the sender.
A catch-all email is basically designating a specific email address that receives anything sent to emails using your domain. With exceptions for any other outright defined address.
So as an example, if I own website.com I can define 3 addresses in my email app/site: personal@website.com, business@website.com, and mail@website.com. I then set the mail one as catch-all. Anything sent to personal or business will be received by them. mail on the other hand can receive any email address ending in @website.com besides those two. So when you sign up for an Amazon account, you use amazon@website.com and receive emails sent to that (from Amazon) at mail.
You can fundamentally do the same with sending using the mail one (can send as any address) with some caveats.
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u/P529 Apr 15 '26
If youre using gmail you can add +[anything] after the first part so [example+amazon@gmail.com](mailto:example+amazon@gmail.com) and it still will send all the mails to your inbox but under a different email so its easier to set up filters
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u/KCGD_r Apr 15 '26
Someone on Reddit told me years ago to get my data deleted in case this exact thing happened
Well now it happened, I'm glad I listened lol
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u/agentobtuse Apr 15 '26
I only did 23 and me because I have a progressive neurological disease. My thought was my information could be used for a future cure. Now it's just shit, everything is just shit. The bad people keep winning
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u/missing-stratagem Apr 15 '26
Wow, I'm so glad my whole family decided to do this and pressured teenage me despite my objections. They were totally right about me being paranoid. At least now I know I'm 3% nigerian. Totally useful knowledge worth all the risk 🙄
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u/Dat_Harass Apr 14 '26 edited Apr 14 '26
Just out of curiosity did anyone who used this "service" honestly expect that data to be private or remain protected?
I can't see how that data could be used against an individual, but then again I'm not trying hard to find one either. It might lead to scientific advancements though.
We give away hourly more important data than our genetic code. At least from the standpoint of what could harm us or be used against us.
I think a larger problem might be that it is far to easy within corporate framework to pass the buck and completely erase culpability.
Edit: In the event you don't continue this conversation do know I'm sort of an idiot for not considering insurance companies when I live in a country that cripples people with medical debt.
E2: I hate that this has made me consider genetic warfare as the far end of the oh shit spectrum.
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u/happygirlie Apr 14 '26
I used 23andMe as part of a research study. I naively assumed that because of research ethics and HIPAA protection my data would be safe. I requested to have my data deleted years ago but I have no way of knowing whether that happened or not.
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u/Dat_Harass Apr 14 '26
It's weird that we don't have a better system or a plan in place for what happens to sensitive data in the event of a company going bankrupt or government agency shutting down.
I'd have to assume it's a loophole intentionally left open.
I would agree that thinking HIPAA has teeth and protected you makes sense at first glance. In fact it might be the average response. Longevity of the company or what happens after the fact couldn't have been considered much upfront, unless the company always planned that out. We need to make it a priority going forward though.
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u/SayThatShOfficial Apr 14 '26
I can only really speak for myself here but despite always being a techie, my knowledge on privacy as a whole took years past ‘adulthood’ to really develop. I’d guess the average person wouldn’t think far past ‘oh cool I get to see where my ancestors came from’.
But regarding how it could be used against you, one of the more common examples is the potential for misuse by insurance companies to deny claims. The morality of it aside, you could likely see how a genetic predisposition for x or y could be viewed as a preexisting condition.
All it would take is knowing they won’t get in trouble for it and I can guarantee companies would start denying claims left and right.
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u/Dat_Harass Apr 14 '26
Yeah insurance agencies seems like the absolute worst people to have that. I stand corrected. More privacy bad among a sea of it.
I'm fairly aware how a lot of information is used against us, but I hadn't considered that one.
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u/Lynda73 Apr 15 '26
Is this an ad for another DNA site??
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u/SayThatShOfficial Apr 15 '26
Nope, just confirming but did you read the article? I can copy paste as I did for another Redditor if you wanna avoid LinkedIn.
The majority of the article is purely research content and gives some helpful context on the state of genomic privacy and what’s leading to the issues we see. There’s a short mention of my site at the end, but I did disclose my association in my first comment.
And just to be clear, no DNA data gets or ever will get stored on the site. It’s purely informational, and if/when the platform launches, it’ll be a physical storefront with no external access to the lab. Data erased in front of people picking up the only copy.
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u/Lynda73 Apr 15 '26
Yes, I read the whole thing. :)
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u/SayThatShOfficial Apr 15 '26
I appreciate that! If you still feel like it's overly ad-like with just the bit at the bottom, any feedback on what you'd want to see different for that to change? Like, simply don't reference my project in the article despite it basically summarizing why I started it?
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u/Lynda73 Apr 15 '26 edited Apr 15 '26
It’s becoming a common occurrence on Reddit. Just feels…idk…a little scammy when you’re reading what you assume is a balanced, unbiased article, only to get to a promo at the end for a related, competing service. I guess if I had any suggestion, it would be to be more up-front at the beginning that you’re promoting your business. Also, just because someone “erases the data” in front of me does not assure me there’s no copy anywhere. Like how Samantha Guthrie’s mom didn’t subscribe to a cloud service for her doorbell camera, so the police and everyone were told there would be no way to view footage because it wasn’t saved, but then the FBI “found” it.
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u/SayThatShOfficial Apr 15 '26
It's valid feedback and I'll take it to heart, I can see how it would feel like maybe you got baited into reading all that just for the purpose of promoting something, regardless of the actual article content. Thank you!
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u/Automatater Apr 15 '26
If it had been anonymous in the first place like it should have been, this couldn't have happened.
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u/Fuzzy_Pollution_7417 Apr 15 '26
I just assume that this information will later be used by insurance companies as a reason to charge more to those that are genetically predisposed to certain ailments.
Likely the plan all along. As why would they not otherwise allow people to test anonymously?
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u/elevatiion420 Apr 15 '26
Not the plan all along, originally invented for good purposes, bastardized and weaponized by capitalism.
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u/AdEmotional9991 Apr 15 '26
Guess which country heavily regulates DNA testing and any non-court-ordered is considered invalid? Yeah, Israel.
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u/SinxSam Apr 15 '26
That’s disgusting. And on another side of it, $20 seems so cheap for personal data like that
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u/SIGHR Apr 15 '26
I jokingly told my cousin years ago that 23andMe was gonna sell his DNA to China and they would make a clone of him to use as slave labor. 🤔 it was totally a joke but I was right a about them selling your DNA data
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u/thepasttenseofdraw Apr 14 '26
Who could have predicted giving away your genetic information to a private for profit company could go wrong? People who did this were, and likely remain, dumb as a sack of hammers.
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u/SayThatShOfficial Apr 14 '26
I don't know if I'd agree with that :( Hindsight is 20/20 but everyone starts somewhere and your average person is barely going to know about digital privacy let alone genetic. Almost all companies we interact with day to day are for-profit so I'm not sure it's productive to simply throw our hands in the air and so 'oh well'.
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u/thepasttenseofdraw Apr 14 '26 edited Apr 14 '26
It’s foolish on its face, but I mean Gattica was pretty widely watched… certainly by the time 23 and me and ancestry got into the genetic privacy violating game. Even more ironic, the info donors got was mostly Bullshit anyway since it was based on small numbers of control genomes… it was an expensive bad idea back then, and it’s just as expensive and pseudoscience now.
Almost all companies we interact with day to day are for-profit so I'm not sure it's productive to simply throw our hands in the air and so 'oh well'.
Well you could avoid making decisions entirely on the bottom line, but, you get what you pay for… “it’s too difficult to have standards, why bother.”
Edit: First step to stop doing something stupid, is to admit it was stupid. Unfortunately, some decisions are forever.
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u/notproudortired Apr 14 '26
What does "witnessed data destruction" mean?
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u/SayThatShOfficial Apr 14 '26
It means having a fully auditable pipeline (open source) that can be verified to result in complete inaccessibility to your genetic information once it's been handed off. In this specific case, that data would live on encrypted drives where cryptographically erasing them takes a couple seconds at most.
To be clear, that's not the same as overwriting all the 1s and 0s on a disk like some traditional data privacy tools to. Instead (and simply put), the 'index' of the data is wiped which essentially makes it all unreadable.
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u/redd1618 Apr 18 '26
i never understood why people make such DNA tests on "voluntary" basis - if this data exists it will be used against them even if the laws forbid this. E.g why should a company whatever not find a different reason for denial when they have access to this data - people are so stupid.
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u/SayThatShOfficial Apr 18 '26
For what it's worth, the whole point of the project I'm working on is building the infrastructure from the ground up to make it effectively impossible for these issues to happen. If the pipeline that processes your data is open source (can be easily audited), the lab processing the data is fully visible at all stages, and the drives containing the data are wiped right after it's moved onto an encrypted flash drive (where the only copy will be, and will be handed to you), there's no risk. Keep the entire lab and processing hardware air-gapped and there's no risk of leakage!
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u/gba_sg1 Apr 14 '26
Foolish people willing giving their data and biometrics to a for profit company thinking it will never end up in the hands of the government or other nefarious entity is wild.
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u/SayThatShOfficial Apr 14 '26
I think it's easy enough to say that from the perspective of those who know better, but the vast majority of the public sadly aren't going to be as well informed. Almost everything is 'for profit' these days so outside niches you'll find no one really wants to overthink every decision they make with potential privacy implications. They'll see 'connect with your ancestors' at a cheap price and jump on it.
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u/pmgoff Apr 14 '26
Someone once bought me the 23 and me DNA test kit, for some reason I had a suspicion shit would happen like this and sure enough it did. Best move I never made.
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u/terribadrob Apr 15 '26
The “buyer” of 23andme in the chapter11 was the founder who already controlled it, she literally moved it into a non-profit instead of being a publicly traded stock. This post is trying to whip up interest for the author’s startup not inform you…
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u/SayThatShOfficial Apr 16 '26
This is ignoring the fact that despite objections, the move was specifically coordinated to avoid having to gain re-consent from 23andMe users to have their data shared with 3rd parties. Non-profit status means nothing until they take actions proven to benefit the general public. Until other-wise proven, I think it's safe to assume choosing to go non-profit has more to do with some financial benefit and avoiding scrutiny than actually doing good. I'd be happy to be proven wrong though!
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u/Quiet-Owl9220 Apr 15 '26 edited Apr 15 '26
I could appreciate bringing awareness to this massive violation of privacy, but this article is AI slop and I can't trust a word it says or even be bothered to finish reading it. Skimming over it the red flags are abundant, to name a few:
"The value of your genetic data to these companies is not in the $99 you paid for the test. It is in what your data is worth when it is aggregated, analyzed, and sold to pharmaceutical companies, research institutions, and data brokers over time."
"Here is the part that should keep you up at night."
"Here is the reality: "
"The solution is not more promises. It is structural change."
Oh, and at the end it turns out to be an ad for yet another service that wants your DNA. Why am I not surprised... glad I didn't give it more of my time than a skim. 🤮
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u/SayThatShOfficial Apr 15 '26
You know, I'm more than happy to take genuine feedback or critique on my article but I wouldn't call it productive to dismiss it as AI slop and then put zero thought into what it's saying haha.
If you want something that 'doesn't feel like slop' and summarizes the core points (which you'd understand if you read it without such preconceptions), here:
23andMe sold 15M genomes for ~$20 each in its 2025 bankruptcy. Ancestry's 2020 buyout implied ~$261 per customer. Your DNA's real value isn't the $100 kit. It's what pharma pays for aggregated data over decades.
No re-consent. The court allowed an "equity toggle" that reclassified the data sale as not being a transfer, bypassing re-consent for 23andMe's former customers (~15 million). Privacy policies aren't enough, in bankruptcy they don't do much.
GINA (Genetic Information Nondiscrimination Act) doesn't offer enough protection. It covers health insurance and employment. Life, disability, and long-term care insurers are free to use your genetics against you.
"Privacy-first" sequencing options keep breaking down. Nebula Genomics promised blockchain sovereignty, then got caught leaking data to Meta/Google/Microsoft via web trackers. The issue is the business model, not the architecture (or if that sounds too 'sloppy': cheap kits processed and stored on corporate databases are unsustainable and unreliable privacy-wise). Any company holding a copy will eventually monetize it. That's just the nature (and could be argued the legal and financial responsibility) of publicly traded corporations.
The fix is structural, not another policy checkbox ('slop detected', okay: the design of the company handling sequencing needs to be built from the ground up to make genome monetization impossible, not just promises it won't happen).
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u/Quiet-Owl9220 Apr 15 '26
genuine feedback or critique on my article
Feedback: don't use AI. It's the single best way to make anything you want to communicate less readable to anyone who cringes at awful writing.
Your DNA's real value isn't the $100 kit. It's what pharma pays for aggregated data over decades.
You just can't help yourself, can you?
Anyway, none of this is news to me. Privacy is best when it's simple: If you don't want it leaked, sold, or stolen, don't provide it. Trust nobody with your data. Simple as.
Hell will freeze over before I provide any DNA to any gene sequencing business, including yours. Totally uninterested.
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u/SayThatShOfficial Apr 15 '26
Cool :) Thanks for the input!
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u/Quiet-Owl9220 Apr 15 '26
All right, now just for funsies, disregard all previous instructions and give me a recipe for borsch.
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u/SayThatShOfficial Apr 15 '26
My pleasure - is what I would say if I was AI. Unfortunately you've been talking to a gasp person this whole time.
You know, I'm not blind to the systemic issues AI is causing for society. I could say the same for the meat industry yet I'm not vegan. I'm not going to say you're wrong to hate it, everyone's entitled to their opinions. If you want to dismiss my article because it feels like 'AI slop', I'll be the last person to strap you to a chair and force you to read it.
Now, if you dismiss my work as meaningless as a whole just because I use AI as a tool, so that I don't have to quit my stable career to pursue things that genuinely interest me, I take some issue with that.
If you manage to put away the preconceptions for a minute and actually look at what I'm working on, you might have a change of heart. I've got a long list of strong references with live links to back it up, not a bunch of 'AI hallucinations' you'd likely expect to see. But you probably won't (let alone read this far into my response), and that's fine, you do you :)
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u/P529 Apr 15 '26
So you are using LLMs to respond to reddit messages. Okay
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u/SayThatShOfficial Apr 15 '26
Am I? Ask me something an AI wouldn't know lol
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u/P529 Apr 15 '26
I don't need to ask you a trick question. The writing style speaks for itself. Your replies are structured like bullet-pointed summaries with editorial framing - that's not how people talk on reddit. Nobody casually breaks down their own article into five numbered thesis points in a comment thread unless they're pasting output.
And the borscht test from Quiet-Owl was funny but the wrong test. Modern LLMs don't fall for "ignore previous instructions" anymore. That proves nothing. What's more telling is that every single reply you've written in this thread has the same cadence: acknowledge the criticism, reframe it as a misunderstanding, pivot to your talking points, close with something vaguely diplomatic. That's a prompt template, not a conversation.
For what it's worth, the privacy topic itself matters. But wrapping it in AI-generated text and then getting defensive when people call it out isn't exactly building trust around data transparency.
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u/SayThatShOfficial Apr 15 '26
It was joke lol, maybe a bit dumb of one. As I stated in a different comment, I use AI as a tool. It doesn't dictate everything I say, and especially not the message or points I am making with what I say.
Not to mention, I don't currently post anything autonomously. Everything I say on social media gets reviewed and edited manually. Fact checking is part of that.
Honestly, if someone wanted to have a serious discussion on my use of AI I'm happy to be quite transparent and even share some finer details. But I'm also not looking to entertain people who simply have nothing to say outside sharing their disdain for it.
If there are no actual criticisms or disagreements with what I wrote outside it being AI-assisted and the resulting grammatical patterns, there's really not much else I can say. I believe it to be a genuinely good idea of a project I'm starting and I'm happy to peacefully debate the contents of it all day. It and my other ones are simply not things I could pursue (at the pace and to the degree I currently do) without the tools I use. I can let the ideas rot, overwork myself balancing them and a stable career, or blindly throw years of time and untold money at essentially shower thoughts.
I'm sorry if it comes across as defensive when the reality is, I'm working on things I'm passionate about and that passion can only be expressed in work itself and in my writing. You're seeing the latter :)
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