All Those 23andMe Spit Tests Were Part of a Bigger Plan

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.

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it wouldn’t be crazy for the 8.8 million 23andMe customers who once absently checked a box saying yeah, sure, use my data for whatever, to feel like they’ve been bait-and-switched now that their genes are laying the groundwork for potential cancer cures.

Yes, it would be crazy. And stupid. As a 23andMe customer this is EXACTLY the kind of thing I expected them to do with the information.

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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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- This entire conspiracy theory falls apart once you realize there is more than one group trying to cure cancer, and have cured multiple cancers, as curing cancer is vastly more profitable than treating it.
  
  Once your cancer is cured, you no longer need treatment, and you won't seek treatment if there's a cure.
  
  Cancer cures (and eventually, vaccinations) are an arms race, and only efficacy matters
  
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- Companies burn food to ensure scarcity and protect their bottom line.
  
  We're stupid
  
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With NIH and FDA oversight and HIPPA compliance right?

Right?

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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.

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- Any unregulated entity that swears they're doing the right thing is straight up lying
  
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The CEO just really likes the taste (and especially the structure) of spit.

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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.

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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)

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- 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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its a news story

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- Yeah, from two years ago and it wasn't even surprising then.
  
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- I don't think it's either
  
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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

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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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- Yeah and with a big enough database u can get an almost perfect modal of the country and everyones placw in it.
  
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Whatever you give to a company is not yours anymore...

Anyway, realistically, a doctor could take one baby's hair right after birth, the fact they don't already is more surprising to me.

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They do, there is a wide range of genetic tests done on newborns. Mostly looking for rare genetic diseases that need treatment from birth. https://www.genome.gov/genetics-glossary/Newborn-Genetic-Screening

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- All children born in Sweden after 1975 have blood samples stored in a biobank. A bit scary tbh.
  
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- That part is great, but I wonder how is this treated legally... I think it should be illegal to keep once tests are done.
  
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Wow! It's something nobody could have ever guessed!

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Yeah this doesn't bother me. And I tend to be a somewhat paranoid person. But I got convinced to do one of these by my partner. And so far, no regrets. They had some family surprises, but they don't regret it either. If they make some cool new meds with my DNA (honestly even if I have only the knowledge that they made meds from 23andme) I'm just going to go around saying hey that might have my DNA in it.

Just wait until you guys find out what they're really doing is cloning us all to replace us with mindless worker drones. I accidentally met mine. They were nice. Bought me a coffee. Then I got real sleepy and woke up half buried in the woods. Real strange day.

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I hope you aren't an Ashkenazi Jew.

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- Yeah I saw when that happened. I don't do the open sharing. But it is easy to identify me as a Jew plenty of other ways. Including online with things attached to my real name. So it is what it is.
  
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Haha, decent show actually.

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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.

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Holy shit, GATTACA was supposed to be a cautionary tale, not an instruction manual!

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- 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
  
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how can we realistically protect something we broadcast.

With appropriate privacy laws and security measures. A smartphone is publicly broadcasting information, in that any other person could receive the radio transmissions emitted from them. But such eavesdropping would be illegal in most cases, and is mostly encrypted to hinder bad actors who don’t obey such laws.

It’s important we act now to ensure there are suitable privacy provisions in place now for all biometrics, before such things as mass DNA collection and sequencing are practical. Once such technology is available, perhaps we will also have to adapt our behaviour in public to prevent leakage of unprotected biometric assets.

Time to start advocating for biometric privacy, and investing in bodysuits and hair nets.

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- you are completely ignoring the fact that a global genetic database is not only in progress, it is inevitable.
  
  you cannot protect something you not only broadcast to the entire world with every breathe, but are also incapable of stopping or encrypting that data, or breaking its chain back to the other humans to which you got yours from.
  
  we absolutely should protect humans from corporations looking to abuse this data, but you need to understand. its public data, and there is zero you can do about its existence or aggregation.
  
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Everyone who thinks this is legitimately bad. I ask, what do you think of AI art data sets? Sometimes, to make something new you have to have mass amount of data to start with.

I think people who paid to have a service, checked a box for their sample to be used for research, and the research is to cure disease, have significantly lower reason to be upset than an artist who used Twitter to upload their work and had said work used as a data set to train a product that will try to make their career even MORE financially immposible.

Boohoo. You signed up for a good cause. Get over it.

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Here's the difference, an artist can make more art. You cannot change your DNA. If someone steals some of your art it's not the end of the world. You can make more. If someone has your DNA, you can't change it. Once its out there that's it. More over having someone's DNA can give you significant insight into into just the person whose DNA you have but also their parents and their children.

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- Once its out there that’s it.
  
  But the subject put it out themslevss. More over, they paid for it be used. No one was tricked, captured or coerced in to giving their DNA.
  
  As opposed to an artist who is promoting themselves and their craft, used without their knowledge to replicate their work.
  
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- You cannot change your DNA.
  
  Or can you?
  
  It's basically just a matter of time and legislation.
  
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If someone opts into the research, I have no problem with thier DNA being used for that purpose. What I do have a problem with is the medical community's belief that providing a biological sample for one purpose (for example, a biopsy) entitles them to use that sample in any way they see fit.

Henrietta Lacks comes to mind, here.

If I pay someone to I dunno, clean my house and I give them a key to enter, that doesn't give them permission to rent out my kitchen or borrow my clothes. Similarly, if I pay a company to sequence my DNA because its the only way I'll ever know where I come from (team adopted,) that should not give them permission to profit off my limited use sample unless they explicitly ask.

If they want to use the collected DNA for additional research, it isn't unreasonable to expect them to ask first.

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- 23andme requires you to agree to what they ask, which is far more than what Johns Hopkins did for Henrietta Lacks.
  
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There’s a big difference between a person’s DNA and a person’s art. DNA is the principle part of someone’s biometric identity, which can be used to reveal an enormous amount of information about a person. Hence it is not unreasonable to expect that its usage will be handled in a careful and clearly defined manner. Most countries have very strict laws on biometric data for a reason.

The same can not be said for a piece of art. While an an artwork will often convey aspects of the artist’s personality, and can conform to an identifiable style, it would provide no where near the level of insight into a persons physical identity as a DNA sample.

It also seems a stretch to conflate sharing something privately and publishing something publicly. The former will have expectations of privacy and control, regardless of whatever is stated any legalese incomprehensible to the average person. The latter however assumes a loss of control, to share something publicly is in some ways to cede it to the public.

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Get outta here with your logical conclusions!

I like your take thank you!

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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?

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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.

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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.

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- 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.
  
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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.

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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.

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surprisedpikachuface

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Called it.

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Seems icky to me.

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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.

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- 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.
  
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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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Here is an alternative Piped link(s):

https://www.piped.video/watch?v=U3EEmVfbKNs

Piped is a privacy-respecting open-source alternative frontend to YouTube.

I'm open-source; check me out at GitHub.

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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.

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No shit sherlock

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Ok, they are using your data to drive pharma development. Does it really matter which pharma company gets rich. If it leads to improvement i. medicine it is a net gain for humanity.

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But what about the $0.20 or so that I'm owed for having my genes used for such a thing! No cancer cures until I get the pittance I deserve!

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- I'm pretty sure I'd end up owing them money in this situation...
  
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- i would be more bothered about knowing i will never be able to afford any life-saving meds that get developed with my DNA than not getting a cut of the profit.
  
  but anyway, i haven't given them mine, for whatever that's worth (since i know at least one family member did).
  
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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.

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originally it was sold as a way to quickly detect genetic diseases before they became a problem.

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Try developing a personality or interests.

says the guy criticizing strangers on the internet.

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- OH SNAP, bro!! You sure told him, Tiger! Good show, old chap! Bravo! Sugoi!!!
  
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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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Too many people in the world crave an identity that is original enough to be interesting, but not so original that it can't be quantified or defined by accepted or understood identity templates. They need to be able to put a name to their identity so they can talk about it.

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- How many is that?
  
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Hang on, this has never been a secret, they straight up said they were doing this! This isn't an "ooh look what they're ACTUALLY doing with your data" story, it's a fucking "Company ACTUALLY delivers on their promises for a change."

This wasn't buried in the T&Cs it was fucking advertised as a feature! It's the service working as intended. Anyone who who gave DNA to them and is surprised by this must have been high.

They are actually doing weird dubious shit, like building profiles on relatives who never give consent so what's the point in muddying the waters with stupid non stories like this?

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