Submitted 1 year ago by L4s@lemmy.world [bot] to technology@lemmy.world
https://www.bloomberg.com/news/articles/2023-10-30/23andme-will-give-gsk-access-to-consumer-dna-data
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.
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
That’s definitely what this is all about. I know because I heard this in an ad for 23&me
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.
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.
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.
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, a million or so dollars is just pocket change. Now no one will accuse them of downloading it off the dark net for probably free.
Are set to ? I thought it was their business model.
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
customers are asked if they wish to
share their data for researchallow their data being sold to 3rd parties
How is this legal?
did you not read the terms and conditions before you agreed to them
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.
fucking scary AF
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?
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.”
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 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.
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 discussion.
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 in the slightest - you just don’t know how to read it.
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.
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.
I’m always so glad to never have used that service.
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.
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.
partial_accumen@lemmy.world 1 year ago
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.
RobotToaster@mander.xyz 1 year ago
en.wikipedia.org/…/Genetic_Information_Nondiscrim…
partial_accumen@lemmy.world 1 year ago
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.
NotMyOldRedditName@lemmy.world 1 year ago
You almost got this right…
It’s more like, you’re 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.
CaptDust@sh.itjust.works 1 year ago
For more information please refer to the documentary ‘Gattaca’
SkyeStarfall@lemmy.blahaj.zone 1 year ago
Society is really doing its darndest to turn all the dystopian cyberpunk worlds into reality huh
FartsWithAnAccent@lemmy.world 1 year ago
We need a lot of things.
Spoiler: We’re not getting them because too many politicians are bought and paid for.
UnspecificGravity@discuss.tchncs.de 1 year ago
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.
eager_eagle@lemmy.world 1 year ago
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.
dangblingus@lemmy.dbzer0.com 1 year ago
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.
Hackerman_uwu@lemmy.world 1 year ago
Someone never saw Gattaca.
ColeSloth@discuss.tchncs.de 1 year ago
Laws against that have already been passed. No one’s allowed to do it.
twoshoes@lemmy.world 1 year ago
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.
Ghostalmedia@lemmy.world 1 year ago
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.
Poayjay@lemmy.world 1 year ago
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.