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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
But, users know that 23andMe will use this data to develop medicine, and they agree to it.
I really don't know what the problem is here.
I don't see anything wrong with this. I'm paying for the ancestry check.
They use DNA, something that I can literally never ever lose or run out of or need in any meaningful way, and use it to make something else.
They are 100% upfront about this. They don't hide it. It is well known and well documented almost everywhere that when you send a sample in to these people. they are going to use it for this purpose.
If you have a problem with this, it s 100% preventable to just not use the service.
They use DNA, something that I can literally never ever lose or run out of or need in any meaningful way, and use it to make something else.
They are 100% upfront about this. They don't hide it. It is well known and well documented almost everywhere that when you send a sample in to these people. they are going to use it for this purpose.
If you have a problem with this, it s 100% preventable to just not use the service.
I don't even let my phone have my fingerprint, there's no fucking way I'm handing my DNA over
Are you an anti-vaxxer, per chance? It's just a medical racket designed to make faceless corporations more money. I hear it actually even makes kids sick when they were healthy. Evil stuff, we're better off without.
In a less snarky manner, anti-capitalist suspicion, while understandable, can easily become full blown anti-science rhetoric, particularly when people are more interested in arguing the ethics of capitalism over understanding the aims of the research, consent of the parties and mechanism of the drug.
Who is mad? People are just discussing this.
People agree to a lot of things because we tend to be lazy. Perhaps I'm wrong but I don't trust any corporation, especially one that makes its money on selling information and researching DNA in order to create new products for money. It sounds like something out of Minority Report. Plus, I can't help but not trust any part of the medical field because of its for profit nature. Helping people in this way should not be monetized. Looks like I'm in the minority.
I think it shows how poor our society is when we have to argue on the merits of medical research supplied by DNA uploaded to a for profit ancestry site. I don't agree that medical science should be a commodity.
Honestly the ability to see your genetic risks for cancer and diseases outweighs any privacy concerns
23andMe makes it very clear that this is the intention of collecting DNA information. It's presented as a feature, it's not buried in a TOS. Everyone who uses the service agrees to this, and you can opt out if you want to.
The problem is when the rest of your family does it. You're damned either way.
You didn't? I bet you agreed to alot in the small print. They'll keep it forever too DNA and samples could be worth a fortune in the future and health data is worth tons now
Not knowingly at least :(
It was worth it to finally truly learn my roots I guess.
Just keep regretting more and more letting my wife talk me into an ancestry kit. I told her I was white as fuckin wonder bread we didn't really need proof.
I wouldn't worry in the future individual types of DNA will be less needed they'll just create new types of whatever they need
There's several levels to the outrage:
- They're selling my DNA! - They aren't, if they did you would need to consent to it explicitly.
- They're selling my DNA in aggregate! - They do let users opt-in/out of this. It's unclear to me if it's default in or out so maybe there's some dark patterns at work but overall this should not be unknown to you since you agreed (and if you blindly signed I'm not sure what you expected with that one, it was pretty clear that was a very likely possibility). Also, they aren't, at least here.
- They're not paying me for being part of a study! - Now we're getting closer. Unfortunately that's not liquid gold in your mouth, any DNA is worthless, it's only in aggregate that this is worth anything. So expecting even 10s of dollars is off the mark (and if you think you deserve more, that's why research to medicine is so ridiculously expensive). So maybe you could get a little bit. If they sold it for 20 million, everyone on 23andme would get about $2 (assuming they ate the R&D costs, and the overhead for Amazon e gift cards because checks wouldn't even be worth it). But they also update their site with new features so you probably got $2 worth of stuff anyway.
- They're making a profit off of me! - Does it matter? You paid for your test and they presumably gave you exactly what was promised. That transaction is over. Feeling bad they made a tiny bit extra you after the agreed transaction was carried out is just a bit much. Again you aren't worth millions, millions are worth millions.
- They're going to mark up this medicine so even the people in the test can't benefit - This is probably the most reasonable concern. We don't know what happens to it or if it will be sold in an ethical way. Certainly as a product of many users, they should have a little bit of say in how it is ultimately used.
I mean wtf. Do you apply this reasoning to everything or just stuff that is convenient?
It's fucked up and reminds me of Henrietta Lacks. They developed stuff from her cells for decades without telling nobody.
And it's no surprise. 23andme has a $300 million deal with GlaxoSmithKline, a drug company.... who has done some shady shit themselves.
And it's no surprise. 23andme has a $300 million deal with GlaxoSmithKline, a drug company.... who has done some shady shit themselves.
Precision medicine and pharmacogenomics is the future of healthcare. The insight and personalized care doctors will be able to provide from DNA profiles will allow for reduced risks, better efficacy and saved lives. There's ethical questions to be met along the way, but if people are unwilling to educate themselves and engage with the science, treating breakthroughs as deserving of a conspiratorial lens under the guise of an anti-capitalist world view, humanity will be worse off.
Don't really get the outrage in this specific instance. They used anonymous DNA data (anonymous to those doing the experiments) to develop antibodies that target a specific disease, oh the horror. When I had to get volunteers to donate blood for science experiments, they would get something minor at best like candy or a small Starbucks gift card just to thank them for their time to come in and have a little bit of their blood drawn. I guess 23andme could send thank you notes lol.
Just got my results today. I'm actually happy my data might be used to develop new drugs and treatments.If it helps someone I'm all for it.
Pro:
These companies work with your DNA, contain it in their lab, run tests on it, aggregate lots of data, build data sets for people with higher likelihood of cancer A, B, C, hairloss, diabetes, etc. So it's easier to study.
Neutral:
Eg: Data found that 5% of people have a higher likelihood of cancer A, 26% likelihood of cancer B, and 1% likelihood of cancer C.
Where do you think the funding will then go? Cancer B.
Con:
What if these companies decide that they can make even more money targeting people with hair-loss, treatable genetic diseases, etc., and collude with the health industry to set a fixed price for some of the services that more and more people will need.
Cancer C now gets little to no funding.
Potentially, people with Cancer B get targeted with ads for cancer treatments. Treatments for Cancer B start going up in price, because there's more revenue to be made from the higher volumes of "clients."
METAL GEAR SOLID CAPITLISIM (seriously, it's funny but consider):
Company sells DNA data. DNA data is then used to target individuals of a particular genetic strand. A weapon is then developed to only attack people with that genetic code.
These companies work with your DNA, contain it in their lab, run tests on it, aggregate lots of data, build data sets for people with higher likelihood of cancer A, B, C, hairloss, diabetes, etc. So it's easier to study.
Neutral:
Eg: Data found that 5% of people have a higher likelihood of cancer A, 26% likelihood of cancer B, and 1% likelihood of cancer C.
Where do you think the funding will then go? Cancer B.
Con:
What if these companies decide that they can make even more money targeting people with hair-loss, treatable genetic diseases, etc., and collude with the health industry to set a fixed price for some of the services that more and more people will need.
Cancer C now gets little to no funding.
Potentially, people with Cancer B get targeted with ads for cancer treatments. Treatments for Cancer B start going up in price, because there's more revenue to be made from the higher volumes of "clients."
METAL GEAR SOLID CAPITLISIM (seriously, it's funny but consider):
Company sells DNA data. DNA data is then used to target individuals of a particular genetic strand. A weapon is then developed to only attack people with that genetic code.
I'm not surprised, but there's also people who work at these companies who drink the Kool-aid and would sell their souls to make more money.
Imagine being stupid enough to sell your dna to a for profit company.
Can't wait for all the "affordable" drugs these guys are going to make in this greedy assed country, answering to shareholders.
At least you know you are 7 different types of white, though. Totally worth it.
Can't wait for all the "affordable" drugs these guys are going to make in this greedy assed country, answering to shareholders.
At least you know you are 7 different types of white, though. Totally worth it.
Your neutral scenario is a huge pro. Data that lets us allocate a finite number of researchers in a way that generates more good is... Well, good.
Your con scenario is a part of a huge issue with US healthcare the government needs to solve at the regulatory level :/ I wouldn't use this to discourage this type of research per se.
I think data aggregation is going to be an amazing thing for healthcare research. I don't think people should be afraid of it. We should regulate it, though!
I think they make you opt-in for research and it definitely was one of their main "draws" : that you would learn about your health, ancestry, and help them with health research.
The capitalistic part of being able to develop amd patent treatments is always a possibility, but hopefully they also share their research with universities or something to outweigh that.
The capitalistic part of being able to develop amd patent treatments is always a possibility, but hopefully they also share their research with universities or something to outweigh that.
People are being angry for others that opted into this service. Is this the new outrage of the week? Disney/Marvel will welcome you back next week for something else that you apparently have zero interest in.
I get the concern about markups on drugs, but under the current system, I really doubt you're going to find an alternative anyways besides no medicine being made and nobody benefits. Drug R&D is really fucking expensive, especially since very few drugs will actually end up hitting the market. And while research can be done at a university level, universities also want to make money and also generally aren't in the business of doing the later steps of drug development. And even if a company does mark up prices, eventually they're patent will run out allowing generics to enter the market and hopefully bring prices back down
The idea is awesome. Use a wealth of consolidated DNA information to help cure people
The way they are going about it is 100% not ok. This should be regulated by the govt and they should make no profit off of it
this thought never crossed my mind. Thanks for a new "what keeps you up at night" topic for me
So, all worth it then.
I'm not shocked this is happening. I'm also not outraged, they developed a new medicine, usually that's good. But it does solidify I ain't never sending my DNA to commercial companies, because who stops them from also doing not good stuff.
The last point is the most obviously material one and the most immediately concerning upon seeing the headline. It won't be distributed ethically.
I don't see the problem here. The increasing police use of these databases is a much bigger
ask Henrietta lacks
ask Henrietta lacks
Yeah, some of these places on the down low work with the cops but don't advertise it cause they want people to keep picking them over the other options.
Remember hearing a story where there was some serial killer who the cops had DNA of (left at the scene or on/ in the victim) but had no one to match it to as he was not in the system ... so they went to one of these companies and found out that a close relative had sent in their DNA and tracked him down that way.
That could be an argument for it.
Personally I'm against giving my DNA to a company.
Nefarious reasons? They developed a drug that might help people some day, not a clone army.
The last point is also only US related and no problem for countries with normal health care
