Some juicy data they sold there.
Now that being said, when it was launched, 23andme was the only way to have very affordable and high-quality and reliable DNA scans.
This data is very useful to improve your quality of life today using tools like Promethease. This to be weighted, against a risk that "potentially" someone may use maliciously in X or XX years.
There is also the "risk" that they use this data to develop popular medicines that will actually help your long-term quality of life (if you can afford it).
It is a very valuable service if you’re Jewish, that others like Heritage.com don’t. Where can you get it otherwise?
I think people knew this would happen, eventually. The real question is whether they cared. To most people, protection and privacy of data like this is still an abstract concern. I suspect that won't change until a serious data leak happens or something along those lines - although I hope I'm wrong.
If these companies were required to put up a big banner before you check out saying "By purchasing this and giving us your data we have the right to sell it to whoever we want" with examples of how the data may be misused by bad actors people may think twice. Not everyone will, but I suspect it would be more effective than you think
Why would someone care whether or not it would be sold if they didn't care enough to provide their DNA to an unknown company to begin with?
You're making an argument about a concern that doesn't even exist in the average person's head.
As noted therein, you need to request a download well before you actually delete your account, since the former requires to batch work to complete and the latter will cancel any in-progress requests.
Life, uh, really does find a way!
People who got bamboozled into paying for this junk service shouldn’t have their DNA data treated as some commodity that can be traded like a stock.
The sale of this data should be treated as PII and "transfers of ownership" should not be implied. The default for every user should be to delete the data upon sale of company and provide a way for users to opt in to the transfer.
Users should be incentivized and trust (if any at this point) needs to be rebuilt with this new company, not implied.
Grandpa sewed some oats before he got with your grandma? That's his business, not his relatives'.
It's hard to argue that a criminal's rights are being violated if he's found out through a DNA database, but the privacy ramifications overall of them are really unfortunate. The world is moving to a place where your biometrics are on the record, and the government can use them to hunt you down (see also, Global Entry, fingerprinting people who work with kids, Real ID, speed cameras, etc.).
I really don't like that we're being surveilled by default now. It's even creepier when there's now an administration in power that has no respect for prior norms and a long list of perceived enemies.
I remember watching GATTACA and thinking how depressing it was in 1997. Its been less than 30 years and we're already here.
I like that you have to be Live Scanned to be an EMT or work with children. You aren't forced to do those jobs and they do require a higher level of trust. The FBI opened its fingerprint database a century ago now, and it's been used for a lot of good and I'm sure some bad. But more good?
That means the only insurer who could afford the risk is the US government.
This is a feature not a bug.
Completely agree. The usual social media esque "it's a free service so you are the product" arguments don't apply here, people paid 23andme for genetic testing.
The good news is:
>"Regeneron pledged to comply with 23andMe’s privacy policy, which allows customers to have their personal information deleted upon request."
There needs to me a massive campaign to convince every single customer to file a data deletion request.
This is important: don't assume that because you're paying for a service that your personal data isn't still being mined. It doesn't matter if you fairly, over or under pay for a service. There's nothing illegal or uncommon about that.
Everybody made fun of Elon buying twitter but the spin-off from it (X.ai) was valued enough to buy the original company.
We'll need to wait a bunch of more years to see if the 23andme concerns were unfounded.
Crucial X.ai bought out X with a minority of stock. X.ai as in the thing spun out from X to do ai using X's data. Fidelity seems to value X.ai enough to be happy to have gotten more shares of it using the X shares.
I swear if OpenAI happened like 1 year prior to the twitter sale then everybody would have a different opinion about 44 Billion being the correct price for twitter.
Genetic information is valuable for finding drug targets, but it's generally a poor predictor of disease, except in case of rare monogenic disorders. With the advent of large population studies such as UK Biobank, which include lots of epigenetic information as well, I am not sure if one can get much extra value from 23andme's dataset in a pharmaceutical context.
Does it though? This is just a temporary stop gap, the data will continue to move and be exchanged, and this company will eventually collapse or be bought out as well.
This has played out in real time since the advent of stable diffusion and LLM ai - the data available on the internet was originally thought to be unmonetizable. Most people putting that data online simply thinks nothing of it, and let it be freely viewed.
Now, all of a sudden, these same people start complaining that their data are being used to train an ai (from which they obviously claim they want a piece of the profit off).
I expect genetics data to follow the same trajectory (and we just dont have any use for said data right now).
Dismissing valid concerns about such data being sold and traded around as "fearmongering" also seems unfair. Given the
Regeneron is among the most science and data focused biopharma and has a long, long history in genetics. They know how critical privacy is and will ensure the data are used to advance human health.
Potentially an even better home for the data than in the company, since now will not have pressure of quarterly reports.
If regeneron cared about user privacy, then they would work to make sure consent to use of every piece of data is obtained.
It should be the default to delete any data that has not received a consent upon transfer and users must opt in for regeneron to use it for research or otherwise.
Buying and selling humans has never been a good thing. Trading their DNA in the marketplace without consent is just the new evil our generation is too blind to see.
In return, I just asked Regeneron to provide me a copy of sequenced DNA data from their CEO and founder. As Regeneron seems to be cool with buying and selling of DNA data they should not have a problem to share their leadership's DNA.
What do I get when another company buys my genetic information?
https://www.scientificamerican.com/article/how-data-brokers-...
Optum Health and IQVIA facilitate this.
Additionally, 23andMe sold data in the past, quite publicly, to pharma companies to help identify drug targets.
My biggest concern, more than the trading of health data and genomes, is that people are not away its happening. That builds distrust. The actual practice of sharing deidentified health data helps improve outcomes and lower costs, aid discovery, etc. etc. But if people don't know it's happening they may get scared and try to stop it, without fully understanding the risks and benefits and how the risks have been mitigated by current law.
I 23andMe delete my data a while back. I argued with people on online forums about it in two different directions: 1) that 23andMe actually would delete your data so go ahead and request it to be deleted, it's not a futile effort, and 2) it's not super important. I did it mostly because I intensely dislike the behavior of 23andMe leadership, and secondarily because it may have ended up in more nefarious hands. Which leads to 3) the most dangerous use of this data is in bad science from bad polygenic risk scores, which have been a big fad for the past few years, but which are also extremely easy to mess up. Discrimination based on bad models with poor results is just as harmful as discrimination based on good models with adequate results, and some might even say worse.
it's even worse if one of your siblings or close relatives does this. people have been implicated in crimes due to relatives getting tested. on the one hand that's great they're closing cold cases, but the disaster where this is used incorrectly against you is horrifying.
The ends do not justify the means. The police should not have an easily searchable database of everyone's genetic profile, no matter how they gathered it.
I'm not interested in services of finding relatives or health coach gimmicks, I just want an one-time purchase of a raw data blob with solid personal privacy guarantees. Am I asking for too much?
Why isn't there a privacy focused company that just doesn't do this.
i mentioned in an earlier comment i'd be happy to start this company if there were that kinda demand. it'd cost you around $1000 USD to get this done and get a hard drive mailed to you with raw data (fastq files).
EDIT: it probably would be cool if this kind of thing existed so consumers could shop their analysis around. it might actually open up some consumer bioinformatics startups
I think there is some sort of middle ground here. Although 99% of consumers don't care about privacy, it's an org risk as we saw with 23&Me. A consumer focused, privacy heavy but cloud based platform will emerge in the wake of 23&Me.
Gemini says a reasonable cost estimate from saliva to SNPs is $163.84 - $211.84 using Ultima $80 for sequencing (funny that sequencing is no longer the bottleneck on cost).
FASTQ is fine but I'd prefer BINSEQ: https://github.com/ArcInstitute/binseq. I'm writing my own pipeline from BINSEQ.
They do have a family matching database, but you can opt out of it I'm pretty sure. They do try to upsell you on frightfully expensive Y-DNA long read sequencing for niche genealogy use cases, but you can just ignore that...
In my opinion only the third is really worth it. Ethnicity estimates are a curiosity, are not accurate at the level most of us care about in genealogy - the big exception is African descendants of slaves, who have both higher accuracy due to the genetic diversity of Africa, and fewer other options.
But that really puts it closer to family discovery, which is a real use case. Caring who you're related to and how is damn near a cultural universal, and some of us care a lot.
Health/traits stuff I see as little better than astrology. Yes, you can find out stuff like if you have blue eyes - but so can a mirror tell me. Odds are you already know yourself far better than the DNA traits testing companies can infer from your DNA.
Right now, health "insurance" is transparently a subsidy scheme where the healthy subsidize the unhealthy. I wonder, if "insurance" companies were allowed to operate as actual actuarial net-neutral-EV honest-to-god insurance companies again, which political coalition would get net savings? I could see it going either way. Conceivably, the efficiency gains from having actual insurance again would result in net-positive EV for both sides.
This is because HIPAA isn't designed to protect your privacy or your data but it's designed to protect the providers and insurance carriers. It's covering their legal asses and maximizing difficulty for everyone else to access information about what they've done to you. It's about protecting their investment.
If HIPAA were designed to protect your privacy, then HIPAA would apply to your data or you personally, rather than the narrow scope of regulated entities.
There should've been an on-going fee to house samples, maintain the website and the labs, and expand the options.
The thing with versions of processes was an expensive way to do it.
Lots of lessons to learn and, hopefully, there will legislation in the EU, US, and elsewhere to regulate personal genetic data as PHI.
wslh•8mo ago