23andMe is out of bankruptcy and it still hasn’t substantially changed its ways

https://www.washingtonpost.com/technology/2025/07/17/23andme-bankruptcy-privacy/

111 83 1 year ago

jmole• 1 year ago

Is there any intrinsic value whatsoever in the DNA or SNPs themselves? Or is it just the link between your name and your DNA that is so concerning?

It seems like you could do lots of useful things without having a name attached to any particular sample. There must be some kind of differential privacy approach here that would work well.

hirvi74• 1 year ago

Can one even truly delete their DNA from 23andMe? Wouldn't deleting someone's DNA require deleting not only the existing record, but also the record from all historical back-ups too? What is to say 23andMe just doesn't flip a bit in their database and claim one's DNA is (soft) deleted?

vintermann8• 1 year ago

Well, GDPR compliance is one thing. It could be very expensive if you have European customers and get caught doing this.

FirmwareBurner3• 1 year ago

If they don't have any offices or assets in Europe, then the EU can't do anything against them for breaking GDPR.

UltraSane• 1 year ago

The only truly reliable way to do this is to have a per-customer encryption key used to encrypt ALL data for that customer. Then you can simply delete the key to delete the customer data.

seanvelasco• 1 year ago

i'm curious, what's the worst-case scenario if one were to put their whole DNA data exposed publicly? would a future civilization re-make your image? or are there societal benefits?

wslh• 1 year ago

Clearly, one risk is that your DNA, or that of a close relative could be linked to a crime, even if you weren't directly involved.

hammyhavoc3• 1 year ago

DNA isn’t guilt by association. Cops still need real evidence—this isn’t CSI fan fiction.

kstrauser• 1 year ago

For example, long-term care, and disability insurance aren’t blocked at the federal level from discrimination based on DNA. If they suspect you might get bad arthritis some day, they can block you from insurance (barring state laws saying otherwise).

vpShane• 1 year ago

The worst case scenario would have already happened: your privacy being violated, and your info being in the hands of anybody or anything that wants to use it against you.

as far as re-making you I think those like thiel and others are in to trans-humanism. so probably to help make the ultimate borg.

chneu• 1 year ago

what's the best case scenario?

vintermann8• 1 year ago

Best case scenario is that you can answer a ton of historical questions that you wouldn't have a chance to otherwise.

I'm currently in the process of figuring out where my most distant known paternal-line ancestor came from. Took a Y-DNA test, found a very distant all-male line cousin who was open to taking a Y DNA test (because he had already taken one at 23andMe, I knew the odds were good that he would be OK with it - the 23andMe test also had enough Y information that I knew it was likely we both descended from the same man).

His first results came in yesterday. In another couple of weeks, when his Y SNPs come in, we'll know which of my ~10 private mutations (ones no one else has been found to share) we have in common, which will in turn put better time estimates on our distance to other testers in our part of the Y-tree.

newman8r• 1 year ago

Best case scenario is it's used to identify unknown remains, or help locate a murder suspect who's probably distantly related to you (i.e. a 5th cousin you never met). More of these samples makes it harder for serial killers to stay hidden for too long.

sjw987• 1 year ago

All your DNA markers show that you have no markers for any adverse genetic conditions and can therefore have lower insurance rates if one of the worst case scenarios occurs (them selling data to health insurers).

I did the 23andme thing years ago (foolishly or not, I found it interesting), and everything on there at the time and when I checked recently said I had no markers for anything. They are very pro-active in reminding you all over the app/website and for each condition they track that they only track a few markers so the results are obviously not really that predictive of anything, and that practicing a healthy lifestyle (whatever your genetic markers) is the most important thing to do.

ashdksnndck• 1 year ago

23andMe’s new business model (Anne Wojcicki and Regeneron both had the same plan for it) is to use the data for drug development. That’s theoretically where the $$$$ is. Turns out you can use statistical association between genes and other biomarkers to discover drugs that will succeed in clinical trials.

So, I suppose, if everyone could use the data, everyone could use it to develop drugs, not just 23andMe. That’s good if you want more drugs to be developed and released… bad if you don’t.

beaugunderson• 1 year ago

someone could synthesize your DNA and leave it a crime scene, to use an example popularized by the consent form of the Harvard Personal Genome Project.

socalgal2• 1 year ago

I signed up for 23andme to specifically make my DNA available. I believe that more DNA = more cures

Note: I'm not saying you should not delete your DNA. Do what you want over course. I'm just saying for me, I signed up, fully expected my DNA to be used to conduct research. That fact that I could get interesting graphs and some health info was just a bonus for me

PaulHoule• 1 year ago

When people say "data is the new oil", I think https://en.wikipedia.org/wiki/Exxon_Valdez_oil_spill

Is the best way to hasten the next bankruptcy to not delete your data?

ulfw• 1 year ago

Deleted it years ago. Don't trust any of them to actually have deleted it.

ks20482• 1 year ago

I do worry about my data with them, but when I think about the worst-case scenario - you will not get insured (or have high rates) because you have {some genetic condition}.. it seems just as likely that they will simply require my DNA to apply for insurance. (or get my DNA from a blood test within their system, etc.).

The obvious solution is with legislation for transparency and better health care system.

echelon3• 1 year ago

you will not get insured (or have high rates) because you have {some genetic condition}..

s/insured/hired

Wait until we have DNA detectors wired up to collect the DNA we exhale and rapid sequencers that handle what might be below the limit of detection today.

Maybe that's fifty years down the road, but it's coming.

Gattaca was a prescient premonition, it was just a hundred years ahead of its time.

ks20482• 1 year ago

Yes, I can imagine those dystopias - my point was that I don't imagine my choice to try 23andMe in 2019 is what dooms me - while others are saved by not making that choice.

hammyhavoc3• 1 year ago

What makes you believe this is coming? What evidence points to this inevitability?

rixed3• 1 year ago

Either you or me are deeply wrong about how genotypes relate to phenotype.

While some DNA characteristics can be statistically linked with some costly health conditions, the connection to "being a good hire" seems totally imaginary to me, has always been and will always be.

For what it's worth, public posts and comments on internet are probably a much better indicator of whether someone is going to be an obedient employee, and this dystopia is technically doable right now, and certainly many are working on it already.

barbazoo• 1 year ago

Why would that matter at hiring time? If the person develops a health issue during employment they’ll just fire them. Unlike insurance where there they’d have to spend money.

qingcharles• 1 year ago

50 years down the road AI will have taken all the jobs, so I'm not sure we should be worried about getting hired. That ship will have sailed.

willcipriano• 1 year ago

I put a fake name in when I signed up.

Good luck blue cross.

data_maan• 1 year ago

I always wondered why people are so trusting (gullible?) to use their real data

slg• 1 year ago

The analogy I have used in the past is this fear is like thinking that health insurance companies were more likely to buy the old Marlboro Miles database rather than just making detailing your smoking history a required part of the application process.

If these companies have the legal clearance to use DNA data, why would they be satisfied only having secondhand access to that data for a relatively small subset of the population? They'll obviously want that data for everyone.

vintermann8• 1 year ago

Yes. Behavioral data is in most cases far more useful to them than DNA. No need to go all the way of using the non-coding SNPs in a genealogical test to infer your coding DNA, to infer your propensity for smoking, when they can just find out if you smoke instead.

lazide• 1 year ago

It’s much ‘better’ for them to use it as an anti-fraud measure later when someone makes a claim, not early on when people are paying them money.

‘You said on your application you don’t smoke, but on x data dump it shows you do. Por que?’ Or just deny your claim for that reason, and make you fight it.

Terr_3• 1 year ago

One aspect to this tangle is knowledge asymmetry: One of the traditional justifications for insurers poking around is to guard against an applicant that conceals important factors as a kind of fraud.

But what about the reverse? There's something intuitively unjust about the customer not knowing why they're being charged a higher rate, especially if it means the company believes there's a potential danger (enough that it affects the bottom-line) but conceals it.

So yeah, I think "transparency" is a robust principle to follow here, especially if anyone is arguing market competition is going to curb the worst abuses.

cm21872• 1 year ago

The paradox is that the better insurance companies are at pricing risk, the more irrelevant their business becomes. If they can predict your disease with 100% reliability, and charge you based on that, then what is the point of buying insurance if you are going to be charged either nothing or the full cost of the treatment, just like if you were not insured.

Except of course in the US, with scammy hospitals charging over-inflated prices to uninsured patients, while only insurers can access realistic prices.

PorterBHall• 1 year ago

Currently, due to the Affordable Care Act aka Obamacare, health insurance companies are prohibited from setting rates based on individual risk (except they can charge higher premiums to tobacco users). Before the law, ensures would typically put applicants through a health screening that would determine their rate. People with pre-existing medical conditions could be denied coverage or charged higher rates. Women routinely paid higher premiums than men.

grues-dinner2• 1 year ago

Things like financial and medical data should be required to have an audit log that you can see, in real-time and subscribe to updates for, including extraction into "anonymised" formats, along with a description of that process, format and a justification for why it is robust against deanonymisation. If data is handled well, there is nothing to fear here. Fiddly, perhaps. Expensive, probably. But personal data processing should be risky and expensive.

Deliberately extracting personal data into un-audited environments without good reason (eg printing a label for shipping), should be punished with GDPR-style global turnover-based penalties and jail for those responsible.

chha5• 1 year ago

Deliberately extracting personal data into un-audited environments without good reason (eg printing a label for shipping), should be punished with GDPR-style global turnover-based penalties and jail for those responsible.

There already are, but only for Europeans through the GDPR.

barisozmen2• 1 year ago

I started doing a relevant project https://github.com/barisozmen/securegenomics . Because I believe 23andMe event will result in people to be more wary of sharing their genetic data, and we need ways to make people able to contribute in genetic research without exposing their data.

jraph4• 1 year ago

In what you show, people encrypt their genome before uploading data on some server, and then scientists can work on the data.

How are scientists able to work on encrypted genomes?

vintermann8• 1 year ago

Homomorphic encryption, presumably? It's not impossible. But I also think it's overkill. Also, I don't know of good open source software that lets me do the kind of analysis I want even on non-encrypted data.

barisozmen2• 1 year ago

Yes, it's by homomorphic encryption as @vintermann mentioned.

That being said, scientists can implement their own protocols, and use whatever technique they want. For example: https://github.com/securegenomics/protocol-alzheimers-sensit....

It's that our platform makes federated computing + homomorphic encryption analysis easy, but protocols are customizable.

kazinator• 1 year ago

The idea that someone who cares about their personal data should happily give it to a company as long as they are not near bankruptcy is absurd.

mgh2• 1 year ago

https://archive.is/7i4GP

ProAm• 1 year ago

Now that they have been 'sold and bought' I dont believe any of the contractual agreements have to be kept. And since the old CEO just bought the company I can only imagine the worse in terms of data to sell.

anothernewdude• 1 year ago

Be careful not to delete all your DNA if you're still alive and using it.

CITIZENDOT• 1 year ago

Why not? Elaborate

7734128• 1 year ago

It's quite hazardous to your health to all of a sudden lack any DNA. Your cells won't know how to replicate for one.

gattr• 1 year ago

You could always restore from incidental backups (hairbrush, etc.).

lion__93332• 1 year ago

That feels really risky. If your DNA is preserved, could a replica of you appear decades later?

vintermann8• 1 year ago

Well, a 23andMe v5 test looks at approximately 640000 locations on your genome, out of approximately 3 billion. So they have to use a lot of "frog DNA" to fill out the rest.

23andMe is out of bankruptcy and it still hasn’t substantially changed its ways

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