Drugmakers Are Set To Pay 23andMe Millions To Access Consumer DNA (bloomberg.com) 106
An anonymous reader quotes a report from Bloomberg: GSK will pay 23andMe $20 million for access to the genetic-testing company's vast trove of consumer DNA data, extending a five-year collaboration that's allowed the drugmaker to mine genetic data as it researches new medications. Under the new agreement, 23andMe will provide GSK with one year of access to anonymized DNA data from the approximately 80% of gene-testing customers who have agreed to share their information for research, 23andMe said in a statement Monday. The genetic-testing company will also provide data-analysis services to GSK.
23andMe is best known for its DNA-testing kits that give customers ancestry and health information. But the DNA it collects is also valuable, including for scientific research. With information from more than 14 million customers, the only data sets that rival the size of the 23andMe library belong to Ancestry.com and the Chinese government. The idea for drugmakers is to comb the data for hints about genetic pathways that might be at the root of disease, which could significantly speed up the long, slow process of drug development. GSK and 23andMe have already taken one potential medication to clinical trials: a cancer drug that works to block CD96, a protein that helps modulate the body's immune responses. It entered that testing phase in four years, compared to an industry average of about seven years. Overall, the partnership between GSK and 23andMe has produced more than 50 new drug targets, according to the statement.
The new agreement changes some components of the collaboration. Any discoveries GSK makes with the 23andMe data will now be solely owned by the British pharmaceutical giant, while the genetic-testing company will be eligible for royalties on some projects. In the past, the two companies pursued new drug targets jointly. GSK's new deal with 23andMe is also non-exclusive, leaving the genetic-testing company free to license its database to other drugmakers.
23andMe is best known for its DNA-testing kits that give customers ancestry and health information. But the DNA it collects is also valuable, including for scientific research. With information from more than 14 million customers, the only data sets that rival the size of the 23andMe library belong to Ancestry.com and the Chinese government. The idea for drugmakers is to comb the data for hints about genetic pathways that might be at the root of disease, which could significantly speed up the long, slow process of drug development. GSK and 23andMe have already taken one potential medication to clinical trials: a cancer drug that works to block CD96, a protein that helps modulate the body's immune responses. It entered that testing phase in four years, compared to an industry average of about seven years. Overall, the partnership between GSK and 23andMe has produced more than 50 new drug targets, according to the statement.
The new agreement changes some components of the collaboration. Any discoveries GSK makes with the 23andMe data will now be solely owned by the British pharmaceutical giant, while the genetic-testing company will be eligible for royalties on some projects. In the past, the two companies pursued new drug targets jointly. GSK's new deal with 23andMe is also non-exclusive, leaving the genetic-testing company free to license its database to other drugmakers.
Anonymous? Bullshit. (Score:2)
If drug makers are truly buying 'anonymous' data, then I dare them to tell the public exactly how that data is somehow more valuable than the per-person-prescription database they already have in their possession.
Anonymous my fucking ass.
Re: Anonymous? Bullshit. (Score:4, Insightful)
Because they don't use it for marketing.
The treatments they can develop and sell are more profitable than sending spam mails.
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I'm not sure I see this as a bad thing though. If they sell me something that benefits me specifically in a great way, why would that be a bad thing?
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It doesn't seem like a bad thing to me either.
I submitted my DNA to 23andMe. I also participated in the surveys, so they could match my phenotypes and any afflictions I may have to my DNA. With a large enough dataset, they should be able to see statistical correlations, find cures, and better understand genetics and the root causes of diseases.
All good. I am happy to help.
Re: Anonymous? Bullshit. (Score:4, Interesting)
" If they sell me something that benefits me specifically in a great way, why would that be a bad thing?"
Dear Sir,
We recently found out from your DNA that you might be dying soon.
If you're interested about the How and When, please transfer $199.95 for a copy of the report.
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Maybe so, but I'd prefer to develop a drug for a group of clients that is generally rich instead of generally poor.
Yes, that's racist. But hey, it's anonymous, so it's allright.
Re: Anonymous? Bullshit. (Score:2)
What if those genes don't define race though? Then it wouldn't be racist. Yes, it would be generically discriminatory.
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You might find that racism IS genetically discriminatory. It's a subset. Ok, it may not be racist per se, but the idea remains the same. There is a group of people who happen to have some genetic expression in common that means fuck all but gets discriminated for.
It's just racism on a more biological level. Yay, we have a pseudoscientific reason now to hate a group of people.
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generically, not genetically.
One reason why those genetic ancestry things are bullshit is because ethnicity is not defined by genes anyway. There are some correlations, but on the whole there are more genetic differences within each group than between groups. There are no genetic markers for ethnicity, as the Israeli gengineers working on a virus that only targets Arabs have discovered. You cannot tell ethnicity from genes. (You can tell certain features from genes, sex being an obvious one, but not eth
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Because they don't use it for marketing.
The treatments they can develop and sell are more profitable than sending spam mails.
Drug makers don't run ads? Someone should probably explain what those dozen-commercials-every-hour are selling on American TV then. Especially to every foreigner visiting America that is quite alarmed at the sheer amount of marketing that drug makers peddle in the US.
The drug marketing problem is so blatant in America that people sound like they work in drug marketing when they deny it.
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They don't need DNA samples to run ads, do they?
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The treatments they can develop and sell are more profitable than sending spam mails.
This is America. There is money to be made. They will just have a subsidiary or third party doing the mailing. This isn't an either/or situation.
Re:Anonymous? Bullshit. (Score:4, Interesting)
The thing that annoys me the most about this is, $20 million goes right into 23andme's pockets? Why don't the DNA donors get anything? In fact, they had to pay for the service! LOL. That is like paying to use Facebook.
Re: Anonymous? Bullshit. (Score:3)
Re: Anonymous? Bullshit. (Score:5, Interesting)
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People checked the checkbox in order to help the scientists struggling to find new cures and relieve suffering. Not to create additional revenue for a corporation.
Are you serious? Did you honestly believe that new cures wouldn't be profitable?
I hope the corporations make truckloads of profit. That gives them an incentive to find even more cures and relieve more suffering. The more profit, the better.
The fact that the data-gathering could be monetized was probably in the TOS that nobody reads.
So you're just now learning that corporations do things to make money? How old are you?
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I don't see this as necessarily a thing that people in general will benefit, sure it might be an intended consequence of them developing a treatment. If I give something to someone then I expect it to be used for the good of all, and not to mainly line the pockets of a few people.
Just because someone is cured of some disease, or more likely lives a little longer but it causes them and their family to become destitute, doesn't mean its a net good, especially when you consider the long term consequences to th
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People checked the checkbox in order to help the scientists struggling to find new cures and relieve suffering. Not to create additional revenue for a corporation. I don't think that anyone expected to see any money for marking the checkbox, they rather expected to contribute to the research. The fact that the data-gathering could be monetized was probably in the TOS that nobody reads. Dishonest in a court of law? Probably not. Dishonest in lots of people's book? Yes.
In the modern world, if you see profit potential, you chase profit potential. Morals, ethics, right and wrong? None of that means a god damned thing. Profit is the name of the game, and it is ALWAYS, and I mean, ALWAYS, correct to increase profits. To the point today that I honestly believe a company could say, publicly, that they have developed a new process that will reduce cost and increase profits, but one out of every ten children will die from the process and people would fucking cheer it. It's disgus
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"Please use my genetic data to figure out cures...which might eventually benefit me and/or my descendants. And in the meantime, be used for licensing fees so you don't go bankrupt and sell my genetic data on the open market to the lowest bidder."
I mean... it's a commercial company. What, you thought they actually made money selling you sequencing kits and then storing your genetic data in their servers in perpetuity?
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"The thing that annoys me the most about this is, $20 million goes right into 23andme's pockets? "
Yes, the buyer pays the seller.
"Why don't the DNA donors get anything?"
They gave it away for free, they even paid for it and clicked the box where they gave up their rights.
"That is like paying to use Facebook."
The Pharma industry pays Facebook as well.
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23andme subsidized their DNA testing. In sufficient volume you might be able to get a DNA sequence for $20 today, but you definitely couldn't whent they started. So no, 23andme customers received something heavily subsidized in exchange for their information. Just like using Facebook.
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I think there are laws that state you can't use data you collect for one purpose for another purpose.
https://gdpr.direct/purpose-fo... [gdpr.direct]
I see it as if I rent a movie from someone then do a public screening and sell tickets, most media companies would be up in arms about that. While I think it should be ok, I see no reason why companies should be able to get away with it and not individuals.
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If drug makers are truly buying 'anonymous' data, then I dare them to tell the public exactly how that data is somehow more valuable than the per-person-prescription database they already have in their possession.
Because the data ties together those that have answered the survey questions about health issues, allergies, etc with their DNA. That data combined with the DNA information allows GSK to look for specific genes that are common to illnesses and attempt to find cures. GSK's per-person-prescription database (if they have access to all the patient's data) only shows who they are and perhaps the drug they have been prescribed, not counting the off-prescription uses.
For example, the gene apolipoprotein E (APOE)
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because it's bigger
Re:Anonymous? Bullshit. (Score:5, Insightful)
23&Me, where you pay to be the product.
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If drug makers are truly buying 'anonymous' data, then I dare them to tell the public exactly how that data is somehow more valuable than the per-person-prescription database they already have in their possession.
They aren't paying for this data just to get a list of contact information to market to. They are paying for the genetic data to create new drugs and treatments. The prescription databases don't help with that.
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I'm not American... do they take a DNA sample when you pick up a prescription? That's weird.
Where do they take it from?
get it for free from the data breach (Score:5, Interesting)
I thought 23andme gave away a bunch of their data in a big breach already: https://theconversation.com/th... [theconversation.com]
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Clearly you haven't been invited to the multi-billion dollar marketing event titled "21st Century Gullible".
You are still on planet Earth, right?
Re: get it for free from the data breach (Score:2)
Re: get it for free from the data breach (Score:2)
In this way, big pharma can illegally use the "free" version, see if they come up with something useful, and if they do, then they pay $20 million to properly license it.
The cynic in me thinks (Score:5, Insightful)
Next they'll be selling it to health insurance companies.
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Shocking how you've predicted the predictable actions of Greed N. Corruption like any museum curator could.
It's weird how we should treat our future historians. Never before have they earned a fist to the face by The Past...
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Wouldn't that be highly illegal though? They need to whitewash it first. How? I'm sure they can have AI come up with ideas, lol.
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This is the one that keeps me up at night (Well that and law enforcement running genes through ML to create a pre-crime system of predicted criminals based on genetic traiits. The chinese are already doing this with ML though I dont *think* via genetics).
We've all seem gattaca by now, its a shockingly plausible future discrimination scenario where nobody gets work without insurance and without perfect genetics you dont get insurance. I know I'd be fucked, asthma and a family history of mental illness, even
Re:The cynic in me thinks (Score:5, Insightful)
They're even putting people in jail because a spreadsheet told them people from a certain postcode has a higher chance of recidivism.
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What exactly makes you think they didn't already? Do you tell the world about every little piece of crap you put up on EBay?
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Not only is the data anonymized, health insurance companies have auditors that look into how they use their data. If an insurance company was intentionally trying to crack the anonymization of patient data, and use it in their risk calculations, they would be heavily fined and have the practice made public. It wouldn't be worth it.
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Next they'll be selling it to health insurance companies.
Some health insurance companies already require DNA testing. Just as some auto-insurance companies require you to bug your car with trackers so they can make sure you don't make jack-rabbit starts, or sudden stops, or swerve in traffic. We've entered the phase where the corporations hold all the keys, and us plebes just have to bow down and obey.
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Some health insurance companies already require DNA testing.
BS. This is illegal since 2008 (Thanks Obama!): https://www.hhs.gov/hipaa/for-... [hhs.gov]
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Health insurance companies can incentivize people to get DNA tests for better preventive care, but they can't discriminate based on this. Also, thanks to the ACA, insurance companies have to offer the same price to everyone in the same community.
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Next they'll be selling it to health insurance companies
The official answer is that they won't do that, but you can bet your sweet bippy the insurance companies are hard at work either trying to figure out how to get it, or how to come up with a plausible parallel construction because they already have it.
anonymous (Score:5, Insightful)
I will never voluntarily allow my DNA to be sequenced by any company or government, unless I can do so anonymously. I don't trust their systems to not be hacked nor that they would follow their own rules nor that laws suddenly change and make it "obtainable."
Ask yourself this: If their model is to provide a service, and they get paid for that service, then why don't they have an option for anonymous submission?
* It isn't about this drug research, if it is supposedly about anonymous data.
* It isn't about contacting you, since that can be done in various ways.
* It isn't about liability because the customer poses no liability concerns to that company.
* It isn't about marketing, if they follow their own rules.
So what is it?
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It wasn't about preventing a global pandemic...the fuck do you need beyond that to realize humans aren't smart enough to survive more than a few generations?
I don't question how humans can be THAT stupid. I more question how intelligent people can be THAT dumb. Like my WISE ancestors did.
Re:anonymous (Score:5, Insightful)
The dumb simply outbreed the smart. And that in turn is a function of what we call civilization.
We literally breed the intelligence out of our populations.
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According to Joe Biden:
"poor kids are just as bright and just as talented as white kids" [nbcnews.com]
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There is a pretty strong correlation in our society between intelligence and wealth. It's not a complete 1:1 match, but there is a certain leaning towards intelligent people simply making far more intelligent choices with their money and not wasting it chasing pipe dreams.
The best combo is of course born rich, intelligent and morally bankrupt. That's pretty much the wealth hattrick.
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Any reasonably complex organism breeds toward the norm. Two smart parents are more likely to have a less intelligent child. Two stupid parents are more likely to have a more intelligent one.
This is not a secret.
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How are you measuring 'dumb' and 'smart'? The Flynn effect shows that IQ generally has been increasing, although IQ is a flawed measurement of intelligence.
Brain size has basically been the same, although we are not as large-brained as our Neanderthal cousins were. That may be a pre-civilization change though - there's some speculation that brainsized decreased in our ancestors as humans formed stronger soci
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I'd define intelligence as the ability to speedily deduce from experience and knowledge how to sort and use new information. The higher the intelligence, the faster the processing of new information and the more information will be sorted correctly and in a useful manner.
Re:anonymous (Score:4, Informative)
Re:anonymous (Score:5, Informative)
Not to be pedantic, but actually it's 99.6% [nih.gov] that you share with me, let alone a relative.
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Exactly. They already know 99.6% of your DNA because you are (one assumes) human.
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Yes... Yes... I am definitely a homo sapien like yourselves, an actual human being. *shifty eyes*
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Yes... Yes... I am definitely a homo sapien like yourselves, an actual human being. *shifty eyes*
Settle down, Zuckerberg! We all know you aren't human.
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Hey! That's uncalled for, what did I do to deserve being insulted?
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In context the only thing he could have meant was 99% of the inter-human variability.
So, yes, it was pedantic, akshully, and unnecessary.
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It's still pretty high. Siblings share ~50% of their DNA in terms of this gene from that parent, but those parents share most of their DNA too, so siblings end up sharing 80-90% of the human variability.
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Well, we share about of the genome with stuff like bananas. [pfizer.com]
We ain't that special, to be blunt. There's a reason we can use animals to test drugs on and find that, hey, the same stuff works on us.
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Humans have less genetic diversity than chimpanzees, and chimpanzees share 95-98% the same DNA as us. A blonde-haired, blue-eyed, nordic "Aryan" is more genetically similar to a Dalit in India than chimpanzees on the extreme ends of their habitats.
If chimpanzees could talk, they would make fun of us for being inbrednecks.
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Be The Match? (Score:3)
With information from more than 14 million customers, the only data sets that rival the size of the 23andMe library belong to Ancestry.com and the Chinese government.
Be The Match claims 22 million:
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.
AFAIK their registry data isn't protected by HIPPA either, yet I never see them mentioned when this topic comes up.
https://bethematch.org/support... [bethematch.org]
MYTH
Sharing personal information and DNA is risky.
See the facts
We protect your privacy and confidentiality.
Sharing your personal information, DNA and blood stem cells is NOT risky because Be The Match has rules in place to protect your privacy. Your blood stem cells go directly to your patient. After you donate, a trained courier takes your blood stem cells to the patient’s hospital for transplant.
Is that why? Because they have a privacy policy?
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With information from more than 14 million customers, the only data sets that rival the size of the 23andMe library belong to Ancestry.com and the Chinese government.
Be The Match claims 22 million: 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.
AFAIK their registry data isn't protected by HIPPA either, yet I never see them mentioned when this topic comes up.
AFAIK, their registry doesn't promise any of that shit. Even if you actually read the fucking EULA.
Let me know when and where we should START using the terms 'consumer idiot', because It seems like we should have been screaming that shit a decade ago. Back when Gullible assumed they were right. Like today.
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I don't understand (Score:1)
The results will be owned by GSK but 23andMe will collect royalties on some projects? How can you collect royalties on something you don't own?
I suppose the most obvious and immediate result from datamining the DNA database is that determining ancestry from DNA is about as accurate as reading tea leaves. Valuable science, but not profitably marketable. Also, bad for their business model.
Is the real news here that 23andMe are looking for more drug makers to hock their database to while it is still worth s
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"How can you collect royalties on something you don't own"
Though a legal agreement I assume. The same way Porsche was paid royalties by VW for decades for the beetle.
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Ferdinand Porsche invented the Beetle, and every Porsche is basically a modified Beetle. Porsche owns the designs.
But if GSK owns the research, how does 23andMe get any royalties from that? They'd have to be co-owners in some way, or what GSK is paying them is something other than royalties. Hush money would be my guess.
IDK, IANAL.
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It's called a contract, and it's generally how it works. If you write a song you don't own any performance or recording of it, but you might well collect royalties from the people who do. Or you may write a song for someone under contract (or sell it to them), who then licenses it to a producer who hires a performer and a recording studio to make a recording, which is then sold or licensed to a distributor, etc. You, the songwriter, still might collec
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As a songwriter, you own the copyright, and you can collect royalties from licencing.
Here it says GSK owns the research, but 23andMe gets royalties.
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Most songwriters work like the rest of us: under contract to someone else. The copyright belongs to whoever paid them.
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That is not how copyright works.
A commission or otherwise working under contract grants the usage rights, it is a licence under copyright. Usually unlimited. You can't actually sell copyright.
And that doesn't apply to research anyway. Facts are not copyrightable.
You can get royalties on patents. Pharmaceutical companies patent things. Patents can be sold. But you'd have to be the owner or co-owner of the patent. You don't get royalties from not owning a patent.
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Lol. You might want to do a bit of Googling. Or check the copyright notice on any proprietary piece of software. Or contribute to a medium size or larger open source project.
No (Score:2)
fucking way should any self-aware human person participate in this dragnet. Fuck off and sequence some orangutans.
DNA Typing is not complete DNA data (Score:2)
They do not do have complete DNA data. Very few companies do that. What they do is sample the population as a whole and figure out the stable genes and common genetic mutations and then find a unique sub sequence only in that gene. They then test for that unique sequence. But there are innumerable rare mutations they do not bother to test for. New mutations are par the course of evolution. There are sections of DNA that are suspected to be nothing and have lots of mutations that are ignored. They only type
To get to the point (Score:3)
23andMe are the wet dream of any future biological weapons program. There's no money to be made in a biological weapon that can kill indiscriminately; there's already diseases that do that. But something smaller scale, with more control? Is there money in control?
Can you get a target's toothbrush? Can you get their disposable coffee cup? You've their DNA.
Some time later: "Oh, looks like they died from the flu. How awful." "Yes, it was a sudden illness."
You know how many botched assassinations their are throughout history paid for by groups with incredible wealth, but who stand to lose a lot if they're exposed?23andMe's database would now be an OFF THE SHELF SOLUTION for a lot of potential targets. Never to be used so long as they're obedient (and all their blood relations are obedient).
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A bioweapon that kills a particular people?
There may be money in that, but anyone inventing this would be remembered as the person who made Hitler look like a saint.
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There may be money in that, but anyone inventing this would be remembered as the person who made Hitler look like a saint.
Never forget that there are still people, today, who believe Hitler was a hero. And if you have such a bioweapon, you can use it to affect the ratio of them to others.
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If we could find a disease that kills stupid... oh wait, we just had something like that, it killed the ones that believed bullshit.
Never mind, we already have the technology, we just need to perfect the process.
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I've unconvinced a majority of scientists have much functional insight into the applications of their work as applied science. That's not an insult to them; it's simply that they're not prophets who could look at the first acorn and describe every oak tree ever after.
I believe a large number of research projects could be (unintentionally) pulling down barriers to a tailored biological weapon; I don't go as far as believing that they *are*. This is just something I've considered and concluded that I can't kn
Who gets paid? (Score:3)
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Any genetic sequences used for drug development would have to be generic across the population. It wouldn't be very useful if it was specific to only you.
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Except that patient-specific drug therapies are a developing technology, so that's not quite true.
Something doesnt add up. (Score:2)
$20 million is chump change. There is no way something of value to drug companies is going for just 20 million. Itâ(TM)s possible that 23andmeâ(TM)s genetic data is actually pretty much worthless to drug companies, or drug companies are getting a fraction of the data available, or 23andme is engaging in some kind of long term profit sharing plan- but there is no way that anything of value is going for 20 million dollars.
Saw this coming (Score:3)
Every time I was temped to use 23andme I kept thinking about my comfort level with having my genetic data sitting in the hands of some private org with few restrictions on it and every time I have decided NOPE. An intellectual curiosity isn't worth it.
Still too slow (Score:1)
I thought 'hey cool, I wanna do the same thing' - so I did. This hasn't affected my life in any noticeable way.
It's worth noting (Score:2)
23&Me don't have actual DNA data, at least not as such. They don't sequence your DNA. This is a mistake that is regularly made on DNA boards on Facebook. 23&Me genotype a very small number of markers and call it quits. The accuracy of their data collection is not fully determined. It'll be adequate, but it won't be great. They do the analysis far too quickly for that.
I'm tested with them (3rd generation, not their current generation - I moved country so can't get the cheap upgrade), FTDNA (MTDNA and
Pharmaceutical companies (Score:2)
Just remember, Pharmaceutical companies are not interested in making cures. Why cure a person once when you can have a customer for life. Find ways to turn off all the body's alarms and have the person be just healthy enough to keep taking the meds for as long as possible.
anonymized (Score:2)
The data may be anonymized, but that doesn't mean the drugmakers can't glean the same info from it that 23&me does, like ethnic group, race, and any other group characteristic. Next, the political requirement that research be concentrated on certain groups because equity.
i've been saying it for years... (Score:1)