I'm against high drug prices, but knowing that's the system, I don't understand the rage directed at 23andme. "How dare you use this data to create new treatments for diseases. I just was to know how Italian I am!"
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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
I mean not to be a nob but this was basically the punchline to any conversation about "ancestry.com" etc for the last five plus years.
It's also very significant that this data may eventually be used to deny you healthcare (or jobs) for pre-existing conditions and it would be naive to think that's not alrerady something insurance companies are trying to do.
It's also very significant that this data may eventually be used to deny you healthcare (or jobs) for pre-existing conditions and it would be naive to think that's not alrerady something insurance companies are trying to do.
This user base has a conspiratorially minded, anti-intellectual undercurrent that you see manifest in threads like this. It's scary honestly, given that this is supposed to be a largely progressive group that will sound the alarm bells on climate change but spread FUD when it comes to medical science, because capitalism. I said it jokingly earlier but would not be surprised to learn that some commenters in here are on the anti-vaxxer train, it fits in with the mindset.
I don't think 23andme did anything nefarious and I bet they informed everyone in the agreements they signed they would be using your DNA however they wanted.
I get that people don't pay attention or read them but with things like your DNA.. or health data.. you should. Especially if you don't want it to be used. You have to take responsibility of what you do with these things
It's beyond stupid to assume a company won't take everything you give them and milk it for all it's worth in all sorts of ways you won't like. Stop giving companies shit without knowing what you are doing. You protect yourself. Nobody else will do it.
I get that people don't pay attention or read them but with things like your DNA.. or health data.. you should. Especially if you don't want it to be used. You have to take responsibility of what you do with these things
It's beyond stupid to assume a company won't take everything you give them and milk it for all it's worth in all sorts of ways you won't like. Stop giving companies shit without knowing what you are doing. You protect yourself. Nobody else will do it.
23andMe explicitly is telling people. This is nothing like HeLa cells and you're disgusting for implying this usage is in any way equivalent to how Henrietta and her family were taken advantage of.
I'm not sure I understand the outrage in this thread. So:
- People willingly bought these DNA tests kit and gave up their genetic information in the process.
- By buying these DNA tests, the company legally obtained DNA info of millions of people.
- The company used the accumulated health data to discover a new drug to treat an inflammatory disease.
- The company sold the license to this drug (they did NOT sell personal info) to a pharmaceutical company so that they can produce and sell the drug.
If you absolutely want to be angry at someone, shouldn't you be angry at the people who gave up their genetic info?
I only read the replies in the first page, but I don't understand the outrage.
So should they stop doing scientific research and develop cures for diseases from anonymized DNA data?
- People willingly bought these DNA tests kit and gave up their genetic information in the process.
- By buying these DNA tests, the company legally obtained DNA info of millions of people.
- The company used the accumulated health data to discover a new drug to treat an inflammatory disease.
- The company sold the license to this drug (they did NOT sell personal info) to a pharmaceutical company so that they can produce and sell the drug.
If you absolutely want to be angry at someone, shouldn't you be angry at the people who gave up their genetic info?
I only read the replies in the first page, but I don't understand the outrage.
So should they stop doing scientific research and develop cures for diseases from anonymized DNA data?
This is the real problem with them owning your data. I'm with the people who don't see this particular case where they sold it and it helped make a drug as nefarious. Sure, you could have gotten the money yourself but if you gave your dna to them, well, you gave them the info. And this may have made it cheaper to develop the drug which means possible cheaper price.
The nefarious thing though is when they start not anonymously selling your data so other companies can use it against you, like health insurance.
It's hard not to be blunt about it, but anyone who signs up for a service that willingly sends your fucking DNA to a corporation for tests (and not even interesting tests, but boring dinner party anecdote tests) and is surprised that the corporation uses your data for sketchy purposes, deserves to be labeled a true moron.
from day one, these ancestry/dna services seemed like the worst idea, with such bad potential for repercussions in the worst case scenario
from day one, these ancestry/dna services seemed like the worst idea, with such bad potential for repercussions in the worst case scenario
Eh, I got my whole family to take the 23andme test. They can do what they want with the data (which is anonymous), in fact government DNA screening for diseases and ancestry should be mandatory for all children once they are teenagers, coupled with a semester learning about human migration, NCD, etc. It would reduce xenophobia and you can take steps to prevent serious diseases in the future.
If this is what it takes to increase social acceptance, so be it!
If this is what it takes to increase social acceptance, so be it!
I would guess the second part is due to 'murica's health system? How is that even a thing?
You're comparing people voluntarily signing over their DNA for this exact usage versus someone's cells being used without their consent, including being harvested from their corpse. The sequences of those cells were shared around the world before the family ever knew, not learning about it for decades.
There's zero similarity between the two sample acquisition methods, and it's disgusting to compare voluntary use of samples to what happened to the Lacks family.
Much like participating in research, you have to opt-in to the relatives side.
It's not "a thing." Not yet, anyway. But the insurance industry has always discriminated against higher-risk patients. It's not inconceivable they could do so even more efficiently with access to your genetic code. Once you surrender your information, there are no take-backs.
And nobody -- NOBODY -- can credibly claim they'll keep your data safe and anonymous.
23andme does not have to tell you they used your information. They reserve the right to use your data. Yeah, Lacks situation is far worse but I see parallels in the question of legality with what companies can do with your cells/dna. What would happen if someone similar to Lacks submits their DNA and 23andme makes a profit from it? Will they even get notified? Who can answer this?
We should have full control over our DNA and info regardless of the platform. Lacks situation taught us this.
And this is a parallel that's been brought up by medium.com and other publications so I guess they're gross too? Go ahead and tell these guys they're gross too: https://www.panafricanalliance.com/african-ancestry-dna-testing/
Lay off on the insults. I'm here to converse not be insulted, Soda. Knock that shit off.
I used one of the other big DNA reading sites, and it was made very clear your DNA would be used for research purposes. Imagine that was the case with 23andme as well.
You answered yourself. If someone similar to Lacks submits their DNA (thus, agreeing to the terms), then it's a completely different scenario.
23andme is not going around taking your DNA while you sleep. People who buy the kit make a choice and are informed that their DNA can be used for scientific purposes.
Not only that, use of your DNA for scientific research is OPT-IN. (Screenshot taken from their research page)
Now, if they used the DNA of people who didn't opt-in, that is when we can talk about illegality. But with the millions of people who buy these kits and opt into this stuff, I doubt they would need to illegally use the information of people who didn't opt in.
I would probably take one of these tests if they were like 5 bucks. I am luckily citizen of a country where I don't have to worry about health insurance but in any case I would know what I would be getting into.
I feel like there needs to be a little separation between Ancestry and X23. Ancestry has primarily been a genealogy/ family tree research companies for years before any kind of dna gathering. While X23 is primarily centered on DNA gathering. Just to add a little difference between the two.
Sorry, you're right. I was overly aggressive and apologize. No excuses for it, I am just quite emotional regarding HeLa cells and their history for a few personal reasons.
Curious to know when Google will get into this. There's a lot of info to feed to AIs to develop potential treatments, cures, and so on. We might be on the verge of quite a rapid evolution in healthcare within the next 10-15 years thanks to AI and gathering of healthcare/DNA data.
I use 23andme and I'm ok with my data being used to develop new drugs and treatments. Yes someone may be making a profit off of these new drugs, but it's something that helps society and humanity in general.
I hope that everyone that's outraged about this realizes that their tax dollars go towards big pharma developing new drugs and profiting off of them as well. In fact, your tax dollars are going towards the profits of a lot of big corporations.
I hope that everyone that's outraged about this realizes that their tax dollars go towards big pharma developing new drugs and profiting off of them as well. In fact, your tax dollars are going towards the profits of a lot of big corporations.
I don't think using this data anonymized is all that immoral, just the way they got the data is pretty much a scam.
pfft these companies helped me reconnect with my family so they're not that bad despite what scaremongers like to think. You can usually opt out of shit like this.
It's basically "capitalism is the root of all evil (written from my MacBook)".
They developed a drug, it's seriously the least nefarious thing they could do with people's DNA.
If they start giving non-anonymous data to allow organizations to target people based on their genes, that would be evil.
You answered yourself. If someone similar to Lacks submits their DNA (thus, agreeing to the terms), then it's a completely different scenario.
23andme is not going around taking your DNA while you sleep. People who buy the kit make a choice and are informed that their DNA can be used for scientific purposes.
Not only that, use of your DNA for scientific research is OPT-IN. (Screenshot taken from their research page)
Now, if they used the DNA of people who didn't opt-in, that is when we can talk about illegality. But with the millions of people who buy these kits and opt into this stuff, I doubt they would need to illegally use the information of people who didn't opt in.
I would probably take one of these tests if they were like 5 bucks. I am luckily citizen of a country where I don't have to worry about health insurance but in any case I would know what I would be getting into.
I see what you're saying. I didn't know it was an option for joining research. Hopefully they only used samples who opted in... how in the world can that be verified.
I'm sorry it affects you personally... I was reading about her recently so it popped up in my head when I saw this. And then I happened to see that article this weekend when looking up reviews of different ancestry services.
But I see why it's different here. I still think her situation has raised questions that haven't fully been answered.
I actually bought 23andme after Christmas but didn't know how loose they are with peoples data. I think I'll go for myheriteage instead.
Can't wait for the story in a few years about how 23andme sold non-anonymous data to governmental entities.
I found there was a DNA testing business right here in my own town so I thought I'd use them instead of one of these huge global corporations.
Then I found out that both the directors were members of this fucking cult (as in an actual cult, it's called Universal Medicine and involves intimate touching and giving them all your money) that operates just outside of town.
Bollocks.
Then I found out that both the directors were members of this fucking cult (as in an actual cult, it's called Universal Medicine and involves intimate touching and giving them all your money) that operates just outside of town.
Bollocks.
LOL always trust major corporations seeking profits to do the right thing.
I have always told people that they need to be getting paid for giving up their DNA, not the other way around.
Branding, it's in the name. If I just want to look at my traits, I wouldn't think that Ancestry focuses on that.