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23andMe Sells Gene-Testing Business to DNA Drug Maker Regeneron
- wslh 1y agohttps://archive.is/OOAfK https://archive.is/OOAfK
- blitzar 1y ago> Bankrupt genetic-testing firm 23andMe agreed to sell its data bank, which once contained DNA samples from about 15 million people, to the drug developer Regeneron Pharmaceuticals for $256 million. Some juicy data they sold there.
- solarkraft 1y ago$17 per person. quite a number.
- wiether 1y agoAnd to think that most of those 15 million people even gave their own money so that 23&Me could sold them for that price later on!
- micromacrofoot 1y agoThey weren't donations, 23andMe provided a service people thought was worth it at the time of purchase
- sumeno 1y agoHad they known all their data was going to be sold later they may have reconsidered whether that service was worth it.
- cheeseomlit 1y agoBased on my conversations with friends who paid for 23andMe they probably wouldn't have cared, and likely still don't. 23andMe customers are the kind of people who put Alexas in their bedroom
- rvnx 1y agoFrom Day 1, it was Google in the shadows of the company (due to the connection with Wojcicki), so it's obvious that a Google-connected company would try to monetize the data. 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).
- falcor84 1y agoThe big "risk" that I see is that this would bring into existence the world of GATTACA, where everyone's genetic information is open, and you might be, e.g. denied a job because they assessed that people with genes similar to yours are likely to do bad in such a role.
- moneywoes 1y agoany examples of quality of life improvements?
- vintermann 1y agoI don't buy any QoL improvements, but genealogy is a use case. For some of us, it is really meaningful and valuable to know who we're related to and how.
- benced 1y agoPrivacy advocates, by-and-large, don't engage with the fact that people are often willing to trade their data for value. Surely some people are under-informed and wouldn't if they fully understood the tradeoffs but there are some people who are fully informed and willing to make that tradeoff. The informed-tradeoff-makers opinions' matter exactly as much as the under-informed group's does.
- florbnit 1y agoTo be fair most people got their results 17$ cheaper than it would have cost them if the data hadn’t been stored to later be sold /s
- burnt-resistor 1y agoIt's like Amazon Echo appliances paying to welcome ads and Big Brother but even more invasive. A DNA database hack would be hard to quantify the risks including personalized or (more far fetched) ethnic biogenetic weapons, insurance and employment discrimination, police and intelligence service surveillance, involuntary parentage and relative revelation.
- azan_ 1y ago$256 is steal for what they are getting.
- rudedogg 1y agoNot sure if it's still the same procedure as in March, but if you haven't done it already: https://www.eff.org/deeplinks/2025/03/how-delete-your-23andme-data https://www.eff.org/deeplinks/2025/03/how-delete-your-23andm...
- jungturk 1y agoIt is - just followed these steps this week. 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.
- yawnxyz 1y agoConsidering the long list of awful pharma, insurance, and marketing firms in the world out there, Regeneron is probably one of the better outcomes
- bflesch 1y agoThey will keep selling and re-selling copies of this dataset as long as there are interested buyers.
- 1vuio0pswjnm7 1y agoLicensing, not selling.
- pavel_lishin 1y agoThere may be some sort of exclusivity clause that comes with the sale - though, of course, that's no guarantee of anything.
- xxpor 1y agoDoes the first sale doctrine apply to B2B?
- pavel_lishin 1y agoI'm not sure if buying a CD from Walmart is comparable to buying a large business full of people's personal data.
- hiatus 1y agoFirst sale doctrine only applies to physical copies.
- benrapscallion 1y agoThat’s not what has been happening with DiscovEHR and Regeneron Genetics Center data.
- dannykwells 1y agoThis is honestly a fantastic outcome. 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.
- tgv 1y agoAnd it's now worth more to aggressive buyers.
- xyst 1y agoThis was the same sentiment about 23andme many years ago. 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.
- cess11 1y agoIf they cared about "privacy" in the sense of data protection rights they wouldn't be based in the US.
- hermannj314 1y agoTelling the slave how lucky he is to have been bought by a good slave owner. 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.
- jadbox 1y agoOn the face of it, this seems like a win-win when you think about Regeneron using this data to make better medicines based on the data.
- Ylpertnodi 1y ago
- bflesch 1y agoSo I have to assume my DNA data was illegally sold by 23andme to Regeneron. 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.
- epistasis 1y agoWhat do you mean by "illegal"?
- psunavy03 1y agoSo I have to assume you didn't read the fine print when you clicked "Accept" or whatever . . .
- zwaps 1y agoIf he is in the EU he would be right
- JonChesterfield 1y agoNeed to offer $17 for it
- usaphp 1y agoThere was a checkbox about letting 23andme use your dna in research, I wonder if that will be forced to be respected by regeneron after a sale?
- hiatus 1y agoIt's crazy that your own genome is not protected health information. Your doctor can't just sell your info to another doctor when they close their practice.
- RandallBrown 1y agoThey can't sell the info, but they can sell the practice, which is very similar.
- Loughla 1y agoBut I'm getting a doctor in that situation. My doctor is leaving, and it's saving me steps, really, in finding a new doctor. What do I get when another company buys my genetic information?
- OJFord 1y agoWhat were you going to get if they continued operating (practicing) instead of selling?
- Loughla 1y agoMy original doctor? I don't understand the question you asked.
- OJFord 1y agoRight, in that analogy, but in this case there was nothing further you would get as far as I'm aware, it was a one and done transaction? So the analogy doesn't really hold, because unlike the doctor's practice without the sale you had no expectation of any further service or benefit from it anyway.
- kjkjadksj 1y agoIt isn’t your genome in question and also people consented towards this.
- rolisz 1y agoAre there any "safer" options for doing genetic testing? From a privacy perspective mostly.
- mylons 1y agonot really. i work in the field. any commercial offering is likely subject to this. every company i've worked for that does personal testing eventually gives their data to someone: other companies, or law enforcement. 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.
- tantalor 1y agoI'd argue that even using the gene database to correctly nab wrongdoers 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.
- mylons 1y agoi agree with you
- drdaeman 1y agoDoes it mean that no company honestly offers a "we sequence your generic material, send you data back, and completely forget the whole affair afterwards, all genetic data wiped on our side with the only copy left being yours - no strings attached" type of service? In a jurisdiction that doesn't require labs to retain anything (so non-US, as US has CLIA). I assume it would cost significantly more than usual subscription/research-subsidized services, of course. 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?
- 1y ago
- SlightlyLeftPad 1y agoI sense a lawsuit incoming that could lead to a supreme court decision on the basis of this being medical data, who actually owns that data? It really isn’t 23andme’s dna to sell to the highest bidder, it’s the customer’s protected health data, and would fall under HIPAA.
- butlike 1y agoI Want To Believe.
- westmeal 1y agoYou're making too much sense
- malfist 1y agoWith this corporatist court? You'd be lucky if they don't reverse the ban on using the data for health insurance and all privacy laws at the same time
- wyager 1y ago> reverse the ban on using the data for health insurance 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.
- criddell 1y agoBe careful what you wish for. If this goes to the current court, having HIPAA struck down wouldn't be all that shocking.
- AStonesThrow 1y ago23andMe doesn't fall under HIPAA at all. HIPAA is scoped to only cover specific entities. Once someone sells/gives your PHI to a non-HIPAA entity, then it's no longer private at all. There are usually disclaimers and warnings about this from providers when you release such things. 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.
- burnt-resistor 1y agoOne time fee, perpetual services are (mostly) inherently unsustainable. 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.