GSK will pay the DNA testing company $20 million for non-exclusive access to genetic 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.
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.
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
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.
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?
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.
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.
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.
“I’m sorry we aren’t covering this cancer claim with our health insurance product because you are genetically predisposed to it”
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.
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.
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
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.
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English
Not the onion. Wow.
How is this legal?
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No
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.
Non pay-walled version: https://archive.ph/gz2dM
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.
fucking scary AF
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.
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?
I see no problem with that. Idk what’s newsworthy here tbh.
I’m always so glad to never have used that service.
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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.
removed by mod
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.
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.
Someone never saw Gattaca.
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.
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
We need a lot of things.
Spoiler: We’re not getting them because too many politicians are bought and paid for.
Luckily I did mine through Ancestry and not 23andMe, considering first they got hacked and now this.
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.