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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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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.
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.
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
did you not read the terms and conditions before you agreed to them
No
fucking scary AF
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.
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
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?
How would you feel about your children being unable to get insurance coverage
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.
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?
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.
The law here is inconsequential
It’s very much not.
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?
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
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.
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.
I’m always so glad to never have used that service.
Non pay-walled version: https://archive.ph/gz2dM
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?
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Are set to ? I thought it was their business model.
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.
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.
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
if it helps accelerate the development of life saving medications
LMAO
Goldman Sachs: “Is curing patients a sustainable business model?”
Not if Wall Street has anything to do with it!
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.
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.
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.
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.
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.
