Drugmakers Are Set to Pay 23andMe Millions to Access Consumer DNA
(www.bloomberg.com)
from L4s@lemmy.world to technology@lemmy.world on 01 Nov 2023 16:00
https://lemmy.world/post/7643406
from L4s@lemmy.world to technology@lemmy.world on 01 Nov 2023 16:00
https://lemmy.world/post/7643406
Drugmakers Are Set to Pay 23andMe Millions to Access Consumer DNA::GSK will pay the DNA testing company $20 million for non-exclusive access to genetic data.
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It’s almost like we all saw this coming when these services started taking off. I’ll never put myself into one, and at least from my best knowledge none of my close family has either
Well if it helps accelerate the development of life saving medications I suppose it’s the least offensive use of that data.
Much preferred over say insurance companies using it or hostile governments lmao
We all know it won’t stop there. Once they have it they’re going to make as much money off of it as possible.
I’m pretty sure insurance companies already have some kind of access to this stuff, despite saying they don’t.
LMAO
Goldman Sachs: “Is curing patients a sustainable business model?”
Not if Wall Street has anything to do with it!
If you can keep someone from dying by being dependent on only your medication, you’ve created a customer for life rather than one who died and didn’t give you all their money to live another day.
We may and should point to all questionably bad practices of these drug companies, but I think humanity is still far better off with their research advancements than without them. So I’m all for using my data for that purpose like 23andMe is doing. Now insurance companies and lobbyists - these can go to hell.
The name of the report is horrific, but a little misleading with just the title. It’s specifically a report about gene therapies, which are obviously still happening. Just look at spinal muscular atrophy, Duchene muscular dystrophy, sickle cell anemia about to be approved, and many others already approved or well on their way.
The main points of the report are a little more benign than the title of the report would suggest and are mostly making suggestions on how to keep a biotech company that is focused on developing cures for rare diseases solvent and running. Their main suggestions were to have a mix of both common and rare diseases, prioritizing diseases with high morbidity (like spinal muscular atrophy), and to keep a constant pipeline of new cures coming out for more rare diseases.
Don’t get me wrong I have many issues with big pharma, but the way that analyst’s report title gets used is very misleading.
That’s definitely what this is all about. I know because I heard this in an ad for 23&me
Or maybe we saw it a decade or more ago when Wojcicki literally said this is what she was going to do with everyone’s data? This company had and greed and suspicious practices tattooed to it’s forehead since inception.
forbes.com/…/expect-to-see-23andme-ads-as-the-com…
I figured one of two things, if not both, would certainly happen with these services. 1. They were going to figure out a way to monetize the information received and/or 2. All the information would be leaked or hijacked. As soon as these services started popping up I told everyone in my family not to trust them. So far, none of us have fallen for the scam. That I am aware of.
Shocking, company not caring about their customers.
who’s not caring? They ask for consent
True, but I think the shady thing is that the data transmission is framed as “Research Participation” - which sounds a lot better than “allow us to sell your data to other companies and institutions.”
It’s understandable they phrase it like that when themselves are the main consumer of this data for their own research. I fail to see any shady behavior from their part here whatsoever. Regarding 23andMe, I’m vastly more concerned with the data leak episode they had recently and what they’re doing to prevent a future episode like this.
It wasn’t a data leak. It was an authorization incursion brought on by users using the same username/email and password combo on other sites that had been compromised. If people don’t have 2FA enabled for these accounts, then it’s on them. There’s literally nothing that 23andme can do about a situation like that when unauthorized users have both the email and password for an account without 2FA. They might have been able to force 2FA on accounts but it’s too late for that when other accounts are compromised.
ah that’s right, my bad. I remember not being sure if the credential reuse thing was 23andMe trying to downplay the attack, but it seems to really be the case. Not much to worry then.
The real dystopian horror is when these genetics companies start selling to insurance companies. Think about it:
“I’m sorry we aren’t covering this cancer claim with our health insurance product because you are genetically predisposed to it”
We need legislation now to prevent genetic discrimination.
We need a lot of things.
Spoiler: We’re not getting them because too many politicians are bought and paid for.
For more information please refer to the 1997 documentary ‘Gattaca’
Society is really doing its darndest to turn all the dystopian cyberpunk worlds into reality huh
Although I wonder if HIPAA would need to get involved in places like the US if that happens. If that data is used to diagnose, then it falls under HIPAA.
If they do that, there will definitely be giant legal battles. I wonder if that is a legal risk they’d want to take on.
HIPAA basically only covers healthcare providers and workers. I ran into this when the VA mailed my entire medical history to some random person. Since it wasn’t the healthcare branch of the VA, I had exactly zero recourse.
That’s not true. HIPAA covers anyone handling protected health information in a professional manner. If some office clerk at the VA is mailing out copies of HIPAA-protected information, they’re bound by HIPAA. If a consulting IT firm has access to a hospital’s servers as they’re changing something about the EHR, they’re bound by HIPAA. Protected information cannot make its way from a “covered entity” to a non-covered entity like a totally unrelated bakery who would not have an obligation to protect your information without either: 1) violating the law, 2) you personally disclosing the information to the non-protected party, or 3) you or someone authorized on your behalf signing a disclosure waiver permitting the covered entity to disclose
in fact regulation IS the way to prevent this kind of discrimination, otherwise these companies can just start demanding genetic tests to rule out predisposition, regardless of the previous existence of a database with this data or their access to it.
en.wikipedia.org/…/Genetic_Information_Nondiscrim…
I remember when this legislation was being drafted. I didn’t realize it had passed!
IMO its still too narrow. There’s nothing in the law I saw that prevents a landlord from using genetic information or car insurance, etc.
What would a landlord do with your genetic information
More likely is a background/credit check service that runs statistical analysis on genetic factors that correlate with late payments or property damage as part of their renter screening service.
Hold my techbro, this smells like a case of VC funded startup!!
“It’s not racist bro, it’s just a statistical analysis on genetic factors that correlate with late payments or property damage.
It’ll be the next big thing, I swear we keep the DNA on our own blockchain, we call it the doublechainix. You get it bro??”
“And we’ll make a sweet app where we can charge people $20 for access to their own data bro!”
he’d feed it and a number of other factors into an opaque, completely unaccountable AI that makes rental decisions for him without disclosing the factors that went into the decision and with no appeals process.
Imagine if housing operated like reddit bans.
So much of the future just looks like fancy new ways to make machines legitimize and carry out our racism for us.
Off the top of my head
This tenant is predisposed to cancer (or other medical issues), which means an increased likelihood of them getting stuck with massive medical bills and financial hardship so they would have a harder time paying rent on time, better Jack up their rent so I can get my money’s worth out of them while I still can or just deny their application altogether
This tenant appears to be part black, Jewish, or some other ethnicity I don’t like, better find a reason to jack up their rent or kick them out
You almost got this right…
It’s more like, your mother submitted DNA and she’s predisposed, so YOU get denied. And that will go back a few generations.
And when it’s something like a 2nd cousin submits DNA and is predisposed, they won’t deny you specifically, but they’ll raise your rates without letting you know why.
Laws against that have already been passed. No one’s allowed to do it.
The problem is, that the law is not absolute. Neither in it’s writing nor it’s application.
Large companies regularly break the law (especially data protection) and face very little consequences. Either because they can afford a staff of lawyers to find and build loopholes, or through schmoozing with the right desicion makers. Paying a fine of 20 million is not much when you made 20 billion (20 thousand million) in profit.
Even more so, very large companies (think Facebook or Google) hold enough political power to influence or even change laws.
Nothing you just doom and gloom said changes the simple fact (it is in writing) that it’s illegal.
You are correct. It is illegal.
Someone never saw Gattaca.
I dunno. That’s all super expected.
To me the dystopian part is millions of people with no personality needing to send spit to a black box private company so they can get a letter back telling them how special they are.
We do have legislation to protect genetic information, what we need is to prevent the gathering and distribution of this information in the first place because those laws go away the second someone is positioned to make a shit ton of money from it.
I see no problem with that. Idk what’s newsworthy here tbh.
The problem is that just because you are ok with sharing your data (even if you don’t understand the potential consequences), your close family and any decendants aren’t able to consent or not consent to their shared genetic data being given to these corporations.
How would you feel about your children being unable to get insurance coverage because a close relative used the service and the insurance company decided they were at too high risk for expensive medical problems due to similarity of genes?
Just pissed off at the insurers, as usual. But seeing it as a data privacy issue misdirects from the actual problem, which is the genetic discrimination and lack of proper regulation (if that would to ever happen). We don’t need to go to hypothetical scenarios of insurance companies scavenging for genetic data - they could simply start demanding genetic tests upon sign-up, which would void the whole “data leak through relatives” discussion and give them a reliable and legitimate dataset.
You don’t need 23&Me to do sketchy stuff for this to happen. They’ll just get your DNA from another blood test. They could simply provide a sizable discount to those who enroll and make the premium for “non genetic” insurance rather high in comparison.
It’s one of the most stable physical data formats. It’s not hard to get someone’s DNA, nor is it hard to analyze these days. You also don’t need DNA to discriminate; they can just find parallel traits and use those.
I dunno, none of this worries me that much. DNA is not that special in my mind. I leave it everywhere I go. It’s not private data - most people just don’t know how to read it.
To be clear, this is a made-up scenario that would be illegal under current US law.
The law here is inconsequential. The only protection that is certain is for the data not to exist.
It’s very much not.
Are you sure?
Yes. The issue you pointed to is being investigated after all. And there are potential damages if they are found to be violating the law.
Did it potentially being illegal actually stop it from happening?
It does stop other things from happening. So how do you square that circle? Or hopefully you can see that your simplistic thinking isn’t terribly useful?
Source please!
You want me to provide a list of laws that insurance companies are not currently violating?
How about the one that you say they will violate? They’ve been not violating that for years since it was passed.
“Prove a negative, please!”
Fuck outta here
You’re asking them to explain why the rule of law discourages behaviours deemed to be against the law. You should be able to find evidence for that yourself, it’s an elementary tenet of any judicial system.
Companies break laws all the time. The punishment is frequently small compared to profits from the crime.
Vague nihilism doesn’t dispute what I said
Who knew giving away YOUR FUCKING DNA to some company was not a good idea
Me 10 years ago, apparently.
You can opt out. Just go to your account. Not as big of a deal as people are making it out to be. Could become worrisome in the future though.
Trusting a software opt out button is such a last resort.
Cool, but does the leak also respect this checkbox too?
People paid 23andMe to give them the data in the first place. Should be illegal to profit off of other people’s data if they’re not getting paid for it.
customers are asked if they wish to share their data for research
potayto potahto - 23andMe making a profit or not changes nothing to the customers. Would it make you feel better if they just gave out the data for free?
Non pay-walled version: archive.ph/gz2dM
Luckily I did mine through Ancestry and not 23andMe, considering first they got hacked and now this.
Luckily I didn’t do mine at all since it was obvious from the start that eventually stuff like this would happen once enough people gave their DNA away like that…
It all depends on how shitty the company is. 23andMe popped up like 5-10 years ago, Ancestry.com was founded in 1997 and existed offline before that. AFAIK they’ve never been involved in any scandals. They just sent me an email today saying “login requirements are changing, you need to enable 2FA, the privacy of our users is of utmost importance.” Yeah I know everyone says that, but some companies actually do mean it.
If you’ve ever had any lab work done where you’ve given blood, they have your DNA anyway.
Not the onion. Wow.
As long as it’s for research and stays HIPPA compliant I don’t really have an issue with it. This would be a good use for AI but that’s also kinda horrifying to think about. Having millions of unique human DNA samples to train your AI on would be worth something I presume.
If they used it to help people, yes. But they’re going to charge for whatever they create.
fucking scary AF
Weren’t they hacked recently? Are the drugmakers sure the data isn’t cheaper on the black market?
They’re why they’re only paying “millions”. To big pharma, $20m is just pocket change. Now no one will accuse them of downloading it off the dark net.
In the future, you have to subscribe to use your specific genes. No choice in the matter because you were born with them, but big pharma owns the rights to those same genes.
Customers are only to blame for sharing giving such data to business that only exist to make money. I have never used these services for the same reason and I will never use them. I don’t trust what they will do with this data if not now, then down the line.
I understand your sentiment, and I do agree that costumers gotta be more aware about what they’re getting into.
With that said, consumers can’t be blamed for legislative failures. That’s what this is, at its core.
When people signed up to Facebook, they just wanted to keep in touch with their friends. When people signed up for Instagram, they just wanted to share pictures. They didn’t want to be endlessly exploited.
And let’s be real, no one is sifting through these privacy policies and ToS that are designed to be impossible to understand.
Same thing here. People just wanna understand their genealogy. Wanting to know your ancestry, shouldn’t come at the expense of incredibly privacy-invading practices.
Why is it that we as consumers need to share to these horrendous business practices if we wanna know our ancestry? Why are there no protections in place? Is it realistic/reasonable to have to read all this incomprehensible language?
How is this legal?
The data is annonimized.
That somehow makes sense. But still, shouldn’t you be able to own “the copyright” for your own DNA? If not there should be some legislation for that I think.
I believe 23 and me stated in the past that they own the data that they process, so in essence if you, or a family member submit their DNA to them, then they own that DNA and part of the DNA of the relatives of whom submitted the sample.
They don’t own the DNA itself, but they do own the rights to the resulting sequence. It’s akin to a biography–you don’t own the person’s life, but the author put it down on paper and owns the rights to the book.
Multiple companies sequencing the same DNA don’t end up in copyright spats because the DNA itself isn’t copyrightable.
Right, sorry. That’s what I meant that they own the data they process. The reason why I went to owning your DNA is more towards that fact that they are processing or digitizing your DNA and the average consumer doesn’t have the power to sue them for their processed data like one of these other companies or a government agency to regulate them. But maybe I exaggerated
Eh, they have about as much power over that as they do any other privacy breaches. It being DNA doesn’t make a huge difference
No way man, you’re not a corporation so you don’t get to own anything.
I’m sure you agree to pass any “rights” to your DNA when you sign the T&C.
did you not read the terms and conditions before you agreed to them
No
.
Are set to ? I thought it was their business model.
I’m always so glad to never have used that service.