23andMe Is On the Brink. What Happens To All Its DNA Data? (npr.org) 60
The one-and-done nature of 23andMe is "indicative of a core business problem with the once high-flying biotech company that is now teetering on the brink of collapse," reports NPR. As 23andMe struggles for survival, many of its 15 million customers are left wondering what the company plans to do with all the data it has collected since it was founded in 2006. An anonymous reader shares an excerpt from the report: Andy Kill, a spokesperson for 23andMe, would not comment on what the company might do with its trove of genetic data beyond general pronouncements about its commitment to privacy. "For our customers, our focus continues to be on transparency and choice over how they want their data to be managed," he said. When signing up for the service, about 80% of 23andMe's customers have opted in to having their genetic data analyzed for medical research. "This rate has held steady for many years," Kill added. The company has an agreement with pharmaceutical giant GlaxoSmithKline, or GSK, that allows the drugmaker to tap the tech company's customer data to develop new treatments for disease. Anya Prince, a law professor at the University of Iowa's College of Law who focuses on genetic privacy, said those worried about their sensitive DNA information may not realize just how few federal protections exist. For instance, the Health Insurance Portability and Accountability Act, also known as HIPAA, does not apply to 23andMe since it is a company outside of the health care realm. "HIPAA does not protect data that's held by direct-to-consumer companies like 23andMe," she said.
Although DNA data has no federal safeguards, some states, like California and Florida, do give consumers rights over their genetic information. "If customers are really worried, they could ask for their samples to be withdrawn from these databases under those laws," said Prince. According to the company, all of its genetic data is anonymized, meaning there is no way for GSK, or any other third party, to connect the sample to a real person. That, however, could make it nearly impossible for a customer to renege on their decision to allow researchers to access their DNA data. "I couldn't go to GSK and say, 'Hey, my sample was given to you -- I want that taken out -- if it was anonymized, right? Because they're not going to re-identify it just to pull it out of the database," Prince said.
Vera Eidelman, a staff attorney with the American Civil Liberties Union who specializes in privacy and technology policy, said the patchwork of state laws governing DNA data makes the generic data of millions potentially vulnerable to being sold off, or even mined by law enforcement. "Having to rely on a private company's terms of service or bottom line to protect that kind of information is troubling -- particularly given the level of interest we've seen from government actors in accessing such information during criminal investigations," Eidelman said. She points to how investigators used a genealogy website to identify the man known as the Golden State Killer, and how police homed in on an Idaho murder suspect by turning to similar databases of genetic profiles. "This has happened without people's knowledge, much less their express consent," Eidelman said.
Neither case relied on 23andMe, and spokesperson Kill said the company does not allow law enforcement to search its database. The company has, however, received subpoenas to access its genetic information. According to 23andMe's transparency report, authorities have sought genetic data on 15 individuals since 2015, but the company has resisted the requests and never produced data for investigators. "We treat law enforcement inquiries, such as a valid subpoena or court order, with the utmost seriousness. We use all legal measures to resist any and all requests in order to protect our customers' privacy," Kill said. [...] In a September filing to financial regulators, [23andMe CEO Anne Wojcicki] wrote: "I remain committed to our customers' privacy and pledge," meaning the company's rules requiring consent for DNA to be used for research would remain in place, as well as allowing customers to delete their data. Wojcicki added that she is no longer considering offers to buy the company after previously saying she was.
Although DNA data has no federal safeguards, some states, like California and Florida, do give consumers rights over their genetic information. "If customers are really worried, they could ask for their samples to be withdrawn from these databases under those laws," said Prince. According to the company, all of its genetic data is anonymized, meaning there is no way for GSK, or any other third party, to connect the sample to a real person. That, however, could make it nearly impossible for a customer to renege on their decision to allow researchers to access their DNA data. "I couldn't go to GSK and say, 'Hey, my sample was given to you -- I want that taken out -- if it was anonymized, right? Because they're not going to re-identify it just to pull it out of the database," Prince said.
Vera Eidelman, a staff attorney with the American Civil Liberties Union who specializes in privacy and technology policy, said the patchwork of state laws governing DNA data makes the generic data of millions potentially vulnerable to being sold off, or even mined by law enforcement. "Having to rely on a private company's terms of service or bottom line to protect that kind of information is troubling -- particularly given the level of interest we've seen from government actors in accessing such information during criminal investigations," Eidelman said. She points to how investigators used a genealogy website to identify the man known as the Golden State Killer, and how police homed in on an Idaho murder suspect by turning to similar databases of genetic profiles. "This has happened without people's knowledge, much less their express consent," Eidelman said.
Neither case relied on 23andMe, and spokesperson Kill said the company does not allow law enforcement to search its database. The company has, however, received subpoenas to access its genetic information. According to 23andMe's transparency report, authorities have sought genetic data on 15 individuals since 2015, but the company has resisted the requests and never produced data for investigators. "We treat law enforcement inquiries, such as a valid subpoena or court order, with the utmost seriousness. We use all legal measures to resist any and all requests in order to protect our customers' privacy," Kill said. [...] In a September filing to financial regulators, [23andMe CEO Anne Wojcicki] wrote: "I remain committed to our customers' privacy and pledge," meaning the company's rules requiring consent for DNA to be used for research would remain in place, as well as allowing customers to delete their data. Wojcicki added that she is no longer considering offers to buy the company after previously saying she was.
It gets bought by an insurance company (Score:3, Interesting)
And millions of people are fucked.
What else would happen?
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Either way, they'll keep PCR'ing all of that DNA until slashdot has enough to make another dupe.
Re: It gets bought by an insurance company (Score:3)
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Most likely to some AI LLM although it could be Chinese indeed.
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Re:It gets bought by an insurance company (Score:4, Informative)
No, it'll get bought by Blackrock or Vanguard, and then the data will be leased to insurance companies.
Re:It gets bought by an insurance company (Score:5, Informative)
It's illegal for insurance companies to use genetic data.
Genetic Information Nondiscrimination Act (GINA) [wikipedia.org]
But even if it were legal, for every loser, there would be a winner. Insurance companies would have an incentive to charge higher rates to people with genetic disorders, but also to offer discounts to attract healthy people who are more profitable to insure.
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Or they could keep premiums the same and make even more profit.
Higher prices don't automatically mean higher profits.
Walmart became the most profitable retailer in history by undercutting the competition.
Customers will switch if one insurance company offers discounts to healthy people and another doesn't.
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There, I fixed it for you.
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But even if it were legal [for insurance companies to use it], for every loser, there would be a winner.
All I see is that you don't understand how insurance companies work -- unless they happen to be the winner.
Re: It gets bought by an insurance company (Score:2)
Or a pension company. It could help them make a decision about much an annuity could pay out for example: those likely to live longer get paid less annually. Thatâ(TM)s why you also shouldnâ(TM)t trust companies like Vitality who want all your lifestyle data.
And then there are foreign governments who could also make long term use of such data.
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And millions of people are fucked.
What else would happen?
Insurance company? Nope. It'll get bought by an ad agency, probably someone like Google, and *SOLD* on an individual basis to insurance companies. They'll probably immediately set about trying to find an algorithm to sort DNA into convenient "we can sell this set of DNA this product" boxes. Progress is awesome.
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What happens to the DNA? (Score:2)
They were already selling it (Score:3)
The price gets lower, that's about it.
Re: They were already selling it (Score:2)
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Then why are they not making any money?
They're selling it for research, but researchers don't pay much.
Meanwhile, their customers are "one and done".
Most companies lose money on marketing + first sale. They make their profits on upselling and additional sales to their established customer base.
But that doesn't work for 23andMe because they have no follow-on products.
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But that doesn't work for 23andMe because they have no follow-on products.
Given the estimates of new fathers who currently have no idea they are in a relationship with or married to a cheating whore, I’d say they have plenty of follow-on opportunity.
In paternity court.
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That doesn't happen as often as you might think. Cheap genetic testing exposed a lot of these cases years ago when services like 23andme were new, but even after all that, it was estimated that something like 1% of kids born into a nuclear family were of dubious parentage. Men having kids out of wedlock have already been getting lab tests done (often for family court).
eww you got DNA in my precrime (Score:2)
I guess that skeevy uncle better start worrying about getting swept up in a genetic dragnet when 5-0 buys the database and starts solving cold cases.
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That doesn't happen as often as you might think. Cheap genetic testing exposed a lot of these cases years ago when services like 23andme were new, but even after all that, it was estimated that something like 1% of kids born into a nuclear family were of dubious parentage. Men having kids out of wedlock have already been getting lab tests done (often for family court).
1%? That’s hilarious. It is currently estimated that 20-30% of fathers are unaware they are not raising their own biological children.
If you question this statistic, I welcome you to take a good hard look at the voracious nature of women fighting tooth and nail against mandatory DNA testing for child support. Tends to screech volumes as to how those estimates may still be low, and how wrong we have been to assume men are the ones who cheat.
If it was anywhere near the 1% you claim, we wouldn’t
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Where are you getting this number? Also I was being specific to affairs in particular :
https://www.discovermagazine.c... [discovermagazine.com].
Births out of wedlock are already heavily scrutinized via genetic testing, where 23andme's database might prove far less useful/scandalous.
Re: They were already selling it (Score:2)
All your DNA are belong to us (Score:3)
Or likely some US government agency like the IRS who didn't get paid in time.
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What if it is (or isn't)?
Re: Mormon Church (Score:2)
That could mean it gets merged with the church giant fake history database
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Only in the sense that the Mormons are very interested in genealogy, and heavy users of DNA testing tools and sites.
23andMe, as well as Ancestry DNA and Family Tree DNA, all have partnerships with FamilySearch.org, a genealogy site that is sponsored by the LDS church. However, these partnerships are business relationships, not religious ones.
per the EULA we can change what we do at any time (Score:3)
per the EULA we can change what we do at any time even sell it to the highest bidder.
and if we go to bankruptcy they it may not even be our call any more.
Be the Match (Score:3)
Anya Prince, a law professor at the University of Iowa's College of Law who focuses on genetic privacy, said those worried about their sensitive DNA information may not realize just how few federal protections exist. For instance, the Health Insurance Portability and Accountability Act, also known as HIPAA, does not apply to 23andMe since it is a company outside of the health care realm. "HIPAA does not protect data that's held by direct-to-consumer companies like 23andMe," she said.
Or like Be the Match, which claims to be over three times as large:
https://en.wikipedia.org/wiki/... [wikipedia.org]
The Be The Match Registry is the world's largest hematopoietic cell registry, listing more than 22 million individuals and more than 300,000 cord blood units.
Slay, Queen (Score:5, Interesting)
You gotta give the CEO of the 23andMe props. The value of their data is CLEARLY worth more than their company's valuation. Those 80% of users have agreed to let 23andMe use their genetic data in any way the company wishes in perpetuity. Other biotech companies are routinely valued in billions of dollars, while 23andMe's valuation is currently ~$160 million. But the founder/CEO has enough voting shares to prevent any other outcome except their own acquisition of the company, so they're acquiring all the shares at a low price. Congrats to them.
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And yet in the era of Fiduciary Duty, none of this money gaming and blatant valuation fuckery, is even slightly illegal?
This is why markets deserve to crash.
Was that the plan all along? (Score:2)
The value of their data is CLEARLY worth more than their company's valuation...the founder/CEO has enough voting shares to prevent any other outcome except their own acquisition of the company.
I don't think it takes an MBA to realize the fault in 23andMe's business plan. They created a service that customers would only ever pay for once. Once all their potential customers were actualized, the marketplace was saturated and no new customers remained; the well ran dry. What other option is there at this poi
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I would say the core fault is the foolish people who blindly sent their DNA to a company they new nothing about with the hopes they would not make use of the data in other money making ventures without the explicit contract.
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I have a rather horrible autoimmune disease (Crohn's / Colitis) which is shared by millions of other people. 23AndMe solicited people with this condition to donate our DNA to help researchers understand it better and maybe one day make a cure. ... oh yeah its *BAD*) and decided to send in that sample.
Surely I am not the only one who weighed my privacy concerns against helping some future person not experience such horrible symptoms (debilitating pain, nausea, rectal bleeding,
OFC, in light of the fuckery aro
Chancellor Palpatine will buy it (Score:2)
to create a Grand Clone army.
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The long and the short is (Score:4, Insightful)
If you ever thought sending your DNA to a for-profit was a good idea, it's too late to do anything about it now.
I know it's not always easy to foresee the consequences of decisions that seem rational at a given time, but in this case, seriously: what were you thinking?
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I can't say my life is an unbroken series of correct decisions. One that I'm please with, though, was my decision to keep my DNA out of corporate hands. (Insert joke here).
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Brother, you and I are still fucked and I would never give away my DNA. I read an article several years ago that they only need like 10% - 20% of the world’s DNA to unravel everyone. If just a few people in your family tree submitted their DNA then they know nearly all of your sequences already. So if you have anyone in your family that did Ancestry.com theres already a big chunk of your chain code already sequenced. This is a giant shit sandwich.
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The same principle means that you shouldn't browse the web, ever, if you want to remain anonymous. Nor should you ever send or receive email, use a cellphone, or walk outside where cameras can track you, or buy or sell anything.
If you want to get away from inevitable tracking, you need to go to the Siberian wilderness like this family. https://www.smithsonianmag.com... [smithsonianmag.com] Oops, even they eventually were tracked down.
I look forward (Score:2)
23andMe is an international company (Score:2)
That means the situation is even more complicated that the writeup states. The data data on EU citizens is already protected personal private data.
Any identifiable data of any 23andMe customer from anywhere in the world is protected in the EU.
Personal choices and consequences (Score:2)
Re: Personal choices and consequences (Score:2)
The Radio Shack precedent (Score:2)
Back in the 1970s and '80s, Radio Shack used to ask all customers for their info at the checkout... and most people filled-out the forms with their addresses and phone numbers etc without even thinking about it (even when making cash purchases and where no warranty issues would be affected). Radio Shack used all of this to build a massive database of their customers which they mainly used to target snail-mailed ads.
When Radio Shack died, something unprecedented happened: as creditors clawed over the corpse
Your DNA is everywhere (Score:2)
People who believe that their DNA sequence info is some precious ultra-sensitive private data need to be sure to be masked and gloved whenever they go outside, and perform secure biocontaminant disposal procedures on their PPE when they come back in. Normal people shed DNA everywhere, all the time, whenever they touch anything or sneeze or cough. 23andMe just facilitated the process of matching DNA data with other identifying info.
Scary press reports never go to the next level of detail, and ask about th
They'll sell it to the Chinese (Score:2)