It was clear from the beginning that 23 and me wasnt selling these far below cost out of the goodness of their heart. They were going to use it to profit one way or the other. The question was how not if.
this post was submitted on 10 Nov 2023
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This seems like corporate whitewashing of all the insidious things they will actually sell user data for. Like "yeah we sell user data but only so we can make a cure for cancer" meanwhile they are selling it to organizations that are building biometric monitoring databases straight out of Minority Report.
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With NIH and FDA oversight and HIPPA compliance right?
Right?
23 and me isn't a healthcare provider and not a "covered entity" under HIPAA . So the protections that would apply if you got genetic testing through your doctor from an actual medical genetic testing company don't actually apply to 23 and me. Though the company maintains it follows federal regulations voluntarily "as a courtesy."
So don't worry, your genetic data is protected by the good will of venture capital tech bros.
Any unregulated entity that swears they're doing the right thing is straight up lying
Yeah 23 and me wanted to have their cake and eat it too. They wanted to run tests for genetic diseases but not have to comply with any of the regulations that would entail, including critical things like HIPAA, offering proper informed consent before testing (which is not just a form but is an actual conversation with a medical professional), and offering up included follow-up genetic counseling services for individuals and their families. This is critical for genetic testing especially, which usually have results that are far more complicated than just a simple negative or positive. Basically just the airbnb or uber models of skirting regulations for profit but applied to genetic testing. FDA stopped them though, so instead of complying with regulations there for good reason they cut out the actual medical tests and now just compile things like, your risk of heart disease may be ~4% instead of ~3% because of this SNP marker we found. All so that the FDA and others can't regulate them like true medical testing companies.
The CEO just really likes the taste (and especially the structure) of spit.
I can't unread this. Good job sir.
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Oh come one, we all knew this right? I spit in the tube knowing they'd use it for drugs, sale or some other research shit. They also feel like they made this pretty clear throughoit the process that they'd use your spittle for science.
That's probably the best case scenario honestly. They use our saliva and cure cancer. That's a great thing for humanity.
The other applications range from questionable to dystopian.. Making a database of everyone's DNA for law enforcement, data leaks and dark-web selling your DNA sequences, insurance buying the data to limit coverage after a claim, forensic genealogy as a way to catch criminals, using forensic genealogy to predict future offenders, targeted bio weapons, future tech like making clones of people, manufacturing fake evidence to plant, using genetic info to target certain types of people (race, gender, what if sexuality is genetic)
One things missing with most of the those: profits. I'd be more worried about bad actors stealing the DNA data and using it for all those. The businesses will keep within regulations to keep the profits rolling in without getting shutdown.
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I'm pretty sure they were upfront about their intended use to help research personalized medication. This isn't some conspiracy.
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Not suprised. Also not suprised they have been handing this data over to law enforcement for years now. Its no just to track down people whove taken said test but also people who are related even distantly. The fbi estimates they can use dna evidance to single dowm the possible people to 2 or 3 out of the entiriry of the us
The fbi estimates they can use dna evidance to single dowm the possible people to 2 or 3 out of the entiriry of the us
i am not sure what you mean by this sentence, but you probably misunderstood something.
dna doesn't single down anything, as in it would help you track something. it tells you if two genetic profiles are a match (that means they come from same person), or that they are genetically similar and how distant they are - that tells you that the profiles come from x times removed relatives. after that, it is down to normal police work.
here is veritasium video about how they used this technology to find and convict the infamous golden state killer - https://piped.video/watch?v=KT18KJouHWg
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Wow! It's something nobody could have ever guessed!
kinda inevitable. with as fast as dna can be sequenced now.. we are publicly broadcasting this information. how can we realistically protect something we broadcast. its kinda like having your photo taken in public. at some point, its gunna happen.
do you have an expectation of privacy on data you publicly broadcast 24/7 everywhere all the time? i dont think so. i think its silly to try.
its only a matter a time before most of the world is captured into a continually aggregated genetic database of unique individuals which will inevitably all link back together.
are there going to be bad actors? yep. lets prosecute those mofos, but this kind of aggregations is far from evil or wrong or.. stoppable.
Holy shit, GATTACA was supposed to be a cautionary tale, not an instruction manual!
i call this the 'tipper gore affect'. aka, 'you see what you want to see'
im kinda hopin we dont go down the full-on genetic editing path as they did in the movie.. maybe just hardcore embryo defect filtering for know diseases/errors
It's not even the genetic editing that was the biggest issue, IMO. It was the pervasive surveillance and discrimination that was even worse.
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This isn't even new. Why are we posting things from over two years ago and treating it like some sort of revelation?
surprisedpikachuface
I never understood the appeal of the business in the first place. Why would you care who your great great great grandpa was? I don't even care who my Grandpa was.
It's commonly used by Adoptees to find their biological family. This can be important for a few reasons, including finally getting accurate family health history.
i had a coworker from my last job find his birth mother through one of these dna websites. the happiness he had on his face when he came back after finally meeting his biological family made me think about 1) how fortunate I am and 2) how many people have used these services to connect to long lost family members.
the good outweighs the bad for now, imo.
No question. It took me 6 years and thousands of hours to find mine (distant matches only, and birth father was dead, and birth mother was also adopted, which added an extra 2 years to the search). If it wasn't for DNA I would never have located her though.
Why would you care who your great great great grandpa was?
I was able to find out that my great grandfather was adopted, and meet a whole new wing of my family. I didn't even do the test, my aunt did.
About 10 years ago they provided medical data from the samples. I used 23 And Me too confirm that a health problem I'd recently been diagnosed with was hereditary. At the time I remember being asked if my sample could be used to aid the type of research the OP talks about and I agreed to it.
A couple of years ago, I think 23 And Me was bought out by Virgin Healthcare, at that point I asked them to destroy all my data was worried about it being used to increase the cost of or preclude health insurance.
I just remembered that destin from smarter everyday did a dedicated video about the privacy of this: https://www.youtube.com/watch?v=U3EEmVfbKNs, then, was it complete bull shit?
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Seems icky to me.
I donated my DNA to a research project. I have Crohn's disease and type 1 diabetes. I'm likely autoimmune prone.
I get updates about what it's used for. Usually trying to identify causes for autoimmune diseases. It feels good to help out the people fighting disease.
But that's sort of the point. You donated it knowing it was going to research. People using 23andme did not. And they will not be getting updates on the research either.
They were very clear it was for research in my memory. That was the reason I did it.
No, the project there referring to is run by 23andme. My whole family participates in the same research because so many of us have Crohn's disease.
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No shit sherlock
I bought a pair of them. The lady and I thought it over for years and finally ended up shit-canning them. It just didn't feel right.
What's funny to me about these DNA testing companies, isn't the obvious data collection ploy, but the customers who feel compelled to buy the service. So the fuck what you're 13% Cherokee and 27% Dutch and 5% Eastern African? Try developing a personality or interests.
originally it was sold as a way to quickly detect genetic diseases before they became a problem.
Try developing a personality or interests.
says the guy criticizing strangers on the internet.
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Seriously how dare people want to learn about their ancestors and where they came from? Obviously that means they have no personality!
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