Capitalism is looking real hot lately
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23andMe used its customers’ health data from the DNA tests they sold to develop a new medication and sell the rights for their own profit
- Thread starter BAD
- Start date
Yeah that's capitalism for you, it's not about what you get it's about how much money they make off you in various ways.
You know, exploitative.
You know, exploitative.
It 100% says they have the right to do anything with your DNA they want to.
I don't fully understand here.
Data was used anonymously I'm guess and for those who opt in?
Can someone clarify the exploitative aspect?
Data was used anonymously I'm guess and for those who opt in?
Can someone clarify the exploitative aspect?
Until it's challenged in court, which I would hope a judge would see how insane it is that you can so easily lose control of your most fundamental data.
for real. The idea that you're handing over personal information has been known from the beginning.
I'm not sure what the grounds would be. You still have access to and use of your DNA. Don't turn over information you don't want to be sold to a third party. I haven't done a dna test (except to see if I had Klinefelter syndrome (I don't), but that was done through a hospital, for a reason).
You are usually paid to take parts in studies and clinical trials. Basically they would have paid people to take DNA samples for their research. Here you literally pay for a more often than not inaccurate ancestry reading of your DNA then they use your sample for studies and research.
It's interesting because they didn't give up data. The developed a product with data and sold it. In that way it's not so different than training an AI model and charging access to it.
May as well read now if you haven't: https://customercare.23andme.com/hc/en-us/articles/212195708-Research-Participation-and-Consent
May as well read now if you haven't: https://customercare.23andme.com/hc/en-us/articles/212195708-Research-Participation-and-Consent
Correlation does not equal causation of (return) payment.
Man, this is messed up. People are paying to sell their own value lol.
Sounds like personal data regulations are needed fast.
(and local systems - for assistance / education around potential uses of data, and how to secure it - via crypto)
Man, this is messed up. People are paying to sell their own value lol.
Sounds like personal data regulations are needed fast.
(and local systems - for assistance / education around potential uses of data, and how to secure it - via crypto)
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I did mine, fully expecting this stuff. I don't particularly care what they use it for after I get my results back. Like, my girlfriend uses baby dick parts and injects shit into live animals to develop medicine that is then sold for profit. Science is messy.
If you guys think this is shit, look up Henrietta Lacks and Hela cells.
Yeah, using the anonymized DNA result data is part of the deal. It's subsidizing the testing and other stuff.
Like, had I taken one of their tests a decade back, I would have caught a genetic disease way earlier than we did because the gene test for it just wasn't available when I was a kid and so no one ever thought to check for it once they thought I was cleared of it as a preschooler. I'm totally cool with them being able to provide this to people at a loss in order to use the bulk data to make a profit because I see it as a win/win. People get cheaper gene tests, new stuff gets developed as a result of the database.
Like, had I taken one of their tests a decade back, I would have caught a genetic disease way earlier than we did because the gene test for it just wasn't available when I was a kid and so no one ever thought to check for it once they thought I was cleared of it as a preschooler. I'm totally cool with them being able to provide this to people at a loss in order to use the bulk data to make a profit because I see it as a win/win. People get cheaper gene tests, new stuff gets developed as a result of the database.
According to its privacy policies, Ancestry.com takes ownership of your DNA forever.
I really don't understand why people use these services. Like it's fine that they do, but I don't get the appeal at all.
What makes you think the tests are a loss? Their founder was on Shark Tank and said she priced them so they could make money, including when the company first started and was charging $1000 per test.
It's not like they sold peoples personalized data, they used anonymized data people willingly gave to them to develop a new treatment for something.
Is...is it a bad thing to develop new treatments for shit? Should they not put to use the data people have willingly given them to come up with ways to help people? It seems like a good use of resources to me. If you don't want people to have your data don't literally pay them to take it from you.
There are bigger fish to fry, like regulating the entire medical industry so that shit that gets developed is affordable for people. But one company using legally obtained data in order to create a treatment... they're not my target and I'm failing to feel mad about it. You should know that when you're giving your data to someone that they'll ...have your data.
Is...is it a bad thing to develop new treatments for shit? Should they not put to use the data people have willingly given them to come up with ways to help people? It seems like a good use of resources to me. If you don't want people to have your data don't literally pay them to take it from you.
There are bigger fish to fry, like regulating the entire medical industry so that shit that gets developed is affordable for people. But one company using legally obtained data in order to create a treatment... they're not my target and I'm failing to feel mad about it. You should know that when you're giving your data to someone that they'll ...have your data.
But hey, at least you learned you were 7% Dutch.
I too am shocked that they have used people's DNA for nefarious reasons. How could anybody have seen this coming?!
If you're stupid enough to give your DNA to a company you deserve to have them do whatever they please with it. Jesus Christ people.
So they used consensually received data to make a drug? I'm extremely against corporate exploitation but I'm not quite getting the outrage here.
As someone who used them, I knew that they would be using my data. Dunno.
Sounds like the beginning of a cyberpunk plot...
Seriously though, many services are free to use. People cannot be expected to know all of the consequences/externalities of their decisions, so some kind of barrier is needed sometimes, to avoid chaos (i.e. education, personal systems).
Complaining is fine. Protecting is best. This is a government failure, tbh.
Software-as-a-service would always lead to crazy stuff like this happening, especially if the service is 'free'.
I'm wondering this too. Isnt the end result helping people? Am i missing something?
Edit: Never mind, I guess they're upfront that they will use your DNA in other ways
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It's cool that companies like this are able to develop drugs we would have no way of doing otherwise. A little less so that it's owned by a capitalist, but that's the price we currently pay in our society.
edit: I can't believe anyone actually thinks this is nefarious. Oh no! Better medications are on the market! The horror!!!!
edit: I can't believe anyone actually thinks this is nefarious. Oh no! Better medications are on the market! The horror!!!!
I know many have used it to find lost siblings or relatives if they were adopted
Seems like some pearl clutching going on in here. They developed new medicines to help people and stay profitable based on DNA and gene testing. They didn't release anyone's personal health information.
So what they made money off the medicine patents? I worry about you guys sometimes
So what they made money off the medicine patents? I worry about you guys sometimes
The question is: do you own your DNA? If you think you do then you should be compensated for the profits generated from your "blood". There is a long history of the medical community & Pharma taking advantage of medical consent. Particularly venerable populations. We just sign those forms not knowing what's going to happen to our medical information.
I recommend the book, The Immortal Life of Henrietta Lacks which goes into these issues.