Former CEO wants to buy it, but the fate of its customers' genetic data is unclear.
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Genetic testing company 23andMe declares bankruptcy
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I bet the FBI will buy the data for a dollar. Then they'll have warrantless familial DNA matching with practically the entire country (and beyond).
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Should an individual have the legal authority to sign away their family tree's genetic information?
I get customers agreed to Terms of Service, but I didn't!
Do I even have the right to ask for my genetic information to be removed from their database if I was never a customer, but my immediate family member was?
I get customers agreed to Terms of Service, but I didn't!
Do I even have the right to ask for my genetic information to be removed from their database if I was never a customer, but my immediate family member was?
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And this, boys and girls, is why you never send a corporation that kind of personal data. Once you send it, it's not yours anymore.
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The absolute last person you would want having that data will end up with it, I guarantee it lol
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acetothermus
Wise, Aged Ars Veteran
Sure in the same way that you can delete any data you've given to Facebook. You'll see it as "Deleted" but it's a soft delete and we won't even go into the backs that they have.
The genetic database that they complied will be worth quite a sum in the very near future.
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https://customercare.23andme.com/hc/en-us/articles/212170688-Requesting-23andMe-Account-Closure
"Once you confirm your request, we will immediately and automatically begin the deletion process and you will lose access to your account. Once confirmed, this process cannot be canceled, undone, withdrawn, or reversed.
If you participated in 23andMe Research, your Personal Information will no longer be used in any future research projects. If you asked us to store your genetic samples, they will be discarded. "
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Note that the California Attorney General recommends users delete their data:
https://oag.ca.gov/news/press-relea...ently-issues-consumer-alert-23andme-customers
23andMe claims you can permanently delete your user data here:
https://customercare.23andme.com/hc/en-us/articles/360004944654-What-s-In-Your-Account-Settings
https://oag.ca.gov/news/press-relea...ently-issues-consumer-alert-23andme-customers
23andMe claims you can permanently delete your user data here:
https://customercare.23andme.com/hc/en-us/articles/360004944654-What-s-In-Your-Account-Settings
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23 and me is/was shady BUT the data ownership shouldn’t be vague due to this bankruptcy. The data is either owned by the customers OR already assigned to the company. If customers owned the data, this event cannot alter that.
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Great, customers can delete their data. My dumbass relative did this, though.
I vote that anyone who wants their genome scanned and put in a corporate database for "fun" should go through a high-energy ionizing radiation bombardment process first, to cryptographically randomize their DNA.
I vote that anyone who wants their genome scanned and put in a corporate database for "fun" should go through a high-energy ionizing radiation bombardment process first, to cryptographically randomize their DNA.
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Where will the data go? To the highest bidder.
There are no meaningful legal protections for the data 23andMe collected. I never did business with any genetic "testing" company, but my sister did. I've assumed ever since that law enforcement can identify me genetically simply because they have her information
I despise this timeline.
There are no meaningful legal protections for the data 23andMe collected. I never did business with any genetic "testing" company, but my sister did. I've assumed ever since that law enforcement can identify me genetically simply because they have her information
I despise this timeline.
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What you mean that very sciency looking dildo attachment they have sitting there? I think it’s an intentional metaphor for what 23andme are doing to its customers (read: product).
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This is essentially how they caught the Golden State Killer/Original Night Stalker/E.A.R. back in 2018.
His family member used a DNA service (not 23andme) that shared customer genetic information with authorities. They identified a familial match from their evidence database and hunted him down.
You may not have committed a crime, but your DNA can be indexed and archived for future authorities/lawmakers to decide if you or your family count as criminals.
tinfoil hat time: What are the odds there are already covert collection programs in companies that provide blood/genetic testing services? We already know they forced ISPs to allow a tap on ALL internet traffic. How hard would it be for them to mass-collect genetic information under similar "national security" orders?
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The genetic testing industry is cutthroat. There is very little space for a profitable company with them.
I've seen a lot of people say that they could be successful if only they didn't try to get into drug development etc. But I am skeptical of that. The amount people are willing to pay for the testing vs. the cost to advertise and get customers + the cost to actually run the test are not insignificant. And if you get less customers the cost per test goes up. I'm not convinced that there is a point where their business model ever makes sense.
23andme originally was hoping that they could sell the info to pharma, but as the article says enough info is now publically available it diminishes the value of 23andme's data. Their other hope was you would subscribe to get updated health info, but the problem is that the new health info is rarely major. And by the time they really got serious and realized they needed some way to actually survive off the money they got directly from customers vs. pharma or other subsidies it was too late.
They had 2 obvious paths to being profitable purely from their services/customers. The ancestry info and the health info.
Ancestry.com, the closest competitor might very well only make money from it due to it's integration with their various subscriptions aka it is a loss leader and they actually have a viable reason why you would want to keep a subscription, to find new relatives + the tight integration with the rest of their ancestry tooling which also require a subscription.
On the clinical side they had competition from clinical genetic testing specialty companies, mostly Invitae in the USA though there are others I would say at this point the biggest company specializing in it. Invitae has the advantage of a diverse test set, connections with doctor offices, the ability to offer genetic counseling, wide insurance coverage, and a whole lot of other stuff. Note: The major generic testing companies e.g. labcorp and similar also have divisions, I don't know the actual market breakdown, I just am much more knowledgable about Invitae because they are focused on it.
23andme could only do genetic disease testing their technology could cover so they could never be the sole provider to doctors offices etc. Whereas Invitae would use multiple technologies to cover all diseases. An example is fragile X, due to the nature of it 23andme's technology cannot test it. So if you are a prospective parent hoping to know what your child's risk of disease or a doctor trying to quickly and efficiently get the results your patients need are you gonna order from 23andme and then also order from somewhere else or just order it at a place that can do all the testing?
Of note, Invitae is having trouble being profitable though I think in the end they will be in much better shape than 23andme they are also not doing great on the stock market etc. At the end of the day clinical genetic testing is a race to the bottom as it becomes more competitive and the cheapest option will win out.
Note/Disclosure: I worked in the genetic testing industry ~8 years ago at a startup. The place I worked at was sold for a loss and I currently work in a different area of biotech.
I've seen a lot of people say that they could be successful if only they didn't try to get into drug development etc. But I am skeptical of that. The amount people are willing to pay for the testing vs. the cost to advertise and get customers + the cost to actually run the test are not insignificant. And if you get less customers the cost per test goes up. I'm not convinced that there is a point where their business model ever makes sense.
23andme originally was hoping that they could sell the info to pharma, but as the article says enough info is now publically available it diminishes the value of 23andme's data. Their other hope was you would subscribe to get updated health info, but the problem is that the new health info is rarely major. And by the time they really got serious and realized they needed some way to actually survive off the money they got directly from customers vs. pharma or other subsidies it was too late.
They had 2 obvious paths to being profitable purely from their services/customers. The ancestry info and the health info.
Ancestry.com, the closest competitor might very well only make money from it due to it's integration with their various subscriptions aka it is a loss leader and they actually have a viable reason why you would want to keep a subscription, to find new relatives + the tight integration with the rest of their ancestry tooling which also require a subscription.
On the clinical side they had competition from clinical genetic testing specialty companies, mostly Invitae in the USA though there are others I would say at this point the biggest company specializing in it. Invitae has the advantage of a diverse test set, connections with doctor offices, the ability to offer genetic counseling, wide insurance coverage, and a whole lot of other stuff. Note: The major generic testing companies e.g. labcorp and similar also have divisions, I don't know the actual market breakdown, I just am much more knowledgable about Invitae because they are focused on it.
23andme could only do genetic disease testing their technology could cover so they could never be the sole provider to doctors offices etc. Whereas Invitae would use multiple technologies to cover all diseases. An example is fragile X, due to the nature of it 23andme's technology cannot test it. So if you are a prospective parent hoping to know what your child's risk of disease or a doctor trying to quickly and efficiently get the results your patients need are you gonna order from 23andme and then also order from somewhere else or just order it at a place that can do all the testing?
Of note, Invitae is having trouble being profitable though I think in the end they will be in much better shape than 23andme they are also not doing great on the stock market etc. At the end of the day clinical genetic testing is a race to the bottom as it becomes more competitive and the cheapest option will win out.
Note/Disclosure: I worked in the genetic testing industry ~8 years ago at a startup. The place I worked at was sold for a loss and I currently work in a different area of biotech.
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I signed in and requested my data this morning - I want a copy of it before I go delete it.
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Ask it a different way:
- Should an individual have the legal authority to send their genetic information to someone else for mutual benefit?
- Should an individual have the right to supply another party with publicly available information, such as who their relatives are?
I don't think there's any reasonable way to restrict those rights without massively curtailing the freedom of an individual over their own information - or an even more egregious restriction of access to public records (e.g. marriage licenses, etc…). Which is why regulation of how genetic information may be used is so critical - because as you're clearly aware - inferences about familial relationships/conditions/traits/etc… are intrinsically coded into a person's DNA.
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This is exactly why I never did this despite my family pressuring me. Good luck folks, seriously. What a nightmare.
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Great, Stephen Miller will hire one of the kids from DOGE to audit the DNA database to determine who is and who isn't a citizen.
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Misread as "Enclosed is a bill for your first mouth."
The rest kind of wrote itself from there.
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It needs to be remembered that:
1) A whole lot of racists throughout history have claimed that "one drop" of non-white blood makes you less than human, and thus targets for oppression, degrading treatment, and in extreme cases, genocide
2) It very much appears that people who hold such beliefs control the entire Federal executive branch, or at least those in charge have very friendly views of people who hold such ideology.
3) Those people also have control of vast amounts of wealth and can buy any company they want to, especially if it's bankrupt and can be bought for cheap.
4) The data on 15 million people can probably tell such people about the likely genetic makeup of far more people via relationships - so call it 100M-200M people.
5) You and your relatives might very much appear to be fully white, if someone is looking at you, but now with this genetic data, this "one drop" ideology can now pinpoint probably millions of people who look white but have a very small amount of non-white genetic heritage.
So, all this is to say a lot of people who either are racists or decided they were fine voting for racists, because they think they're white, and it will only affect "other people" are probably about to find out just how bad racism really is, and that it might even oppress you, even if you think you are protected and privileged.
1) A whole lot of racists throughout history have claimed that "one drop" of non-white blood makes you less than human, and thus targets for oppression, degrading treatment, and in extreme cases, genocide
2) It very much appears that people who hold such beliefs control the entire Federal executive branch, or at least those in charge have very friendly views of people who hold such ideology.
3) Those people also have control of vast amounts of wealth and can buy any company they want to, especially if it's bankrupt and can be bought for cheap.
4) The data on 15 million people can probably tell such people about the likely genetic makeup of far more people via relationships - so call it 100M-200M people.
5) You and your relatives might very much appear to be fully white, if someone is looking at you, but now with this genetic data, this "one drop" ideology can now pinpoint probably millions of people who look white but have a very small amount of non-white genetic heritage.
So, all this is to say a lot of people who either are racists or decided they were fine voting for racists, because they think they're white, and it will only affect "other people" are probably about to find out just how bad racism really is, and that it might even oppress you, even if you think you are protected and privileged.
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To update and underscore your point, Invitae went bankrupt last year, and was bought by LabCorp. There are a few other small/medium genetic testing companies but they aren't operating at a profit (Myriad) or are going through consolidation (Tempus/Ambry).
These companies are not bothering with "lifestyle" health data or hobbyist geneology, or anything direct-to-consumer for a few hundred bucks at most. They're entirely in the business of diagnosis and risk prediction for thorny medical issues, where there's a relatively small market of patients, medical providers, and insurance providers that are willing to spend thousands.
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I have a list of people that could be voluntold to test this process. You know, to validate it.
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What you mean that very sciency looking dildo attachment they have sitting there? I think it’s an intentional metaphor for what 23andme are doing to its customers (readroduct).
You mean one of these?
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You didn't encounter those things with COVID tests? The swab usually goes in there (it has some liquid) and then that is dripped onto the test wafer thing.
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While I support your conclusion, your characterization of consumers and the service here is uncharitable and innaccurate.
In the most abstract terms, yes, consumers were sending this company their genetic data. But we as consumers do this all the time. Any time you get bloodwork done, you're sending in your genetic data. Doctor wants to run a lipid panel? You get a blood draw and they send the blood to a lab. I will give you that this is all done in a medical setting with strict guidelines and personal data protections, however the distinction for consumers, even those who are relatively careful, is VERY tenuous.
In this case, I'm quite positive that 99.99% of people who used 23andMe felt they were GETTING personal data from the company, not sending personal data. I sent blood, something that literally spills out of me when I cut myself. No big deal. What I get back is a really cool analysis of genetic markers, heritage, etc. Yes I know there were some very legitimate personal data concerns voiced for a long time. I read many articles about them here on Ars and made the choice not to use these services, but many people I know did use it including my brother and sister.
I guess what I'm saying is, don't say "This is why you don't send personal data..." when the company is providing a paid service that gives you a very compelling data analysis back and when I don't think anyone I personally know would equate sending in a blood sample with "sending personal data" even though technically DNA is the most personal of data one could think of, when it comes down to it.
I guess there are a lot of very clear differences between "sharing personal data" and what we have here. its not even subtle nuance, even in hindsight.
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Have you seen Back to the Future? Its like that: you slowly cease to exist starting from the hands. I think...
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