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.
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?
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
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.
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.
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.
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.
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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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.
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.
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?
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
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.
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.
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.
Called it.
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.
The business will gladly sell to the alphabet boys. And hackers will definitely get the data from poor security.
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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Yeah, from two years ago and it wasn’t even surprising then.