Removed by mod
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.
They’ll never make a cure for cancer. Illness and death are far more profitable.
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.
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.
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.
I don’t understand why people are so against this. Literally anyone whose relative died from a “rare” disease wouldn’t care if instead they were born in a time where it was prevented via genetic editing removing the offending genes.
Genes… Blood who cares? Total strangers from opposite sides of the globe can love eachother and two family members from same parents, of same blood, can kill eachother, it’s irrelevant.
Humans did this sort of thing to everything around themselves and it has done nothing but benefitted us. You think apples have this much flesh to bite into because god made them that way? No, literally we made them this way.
Selective breeding is very primitive form of genetic editing, it’s still done today even, for example in dogs, and everyone loves dogs for some reason, even those that can’t breathe properly because of how they’re bred to be.
What is it that causes people to think it’s an abomination only when they’re the subject of it?
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
Yeah and with a big enough database u can get an almost perfect modal of the country and everyones placw in it.
with big enough database you simple have every single person in it. that still doesn’t back up the quote i disputed in any way. can you find source of the quote? i’d be interested to see the original.
They caught the Bay Area Strangler(or whatever his title was) by finding a dna relative match on one of these services and using that to narrow down suspects. DNA can absolutely be used to narrow things down without just having a direct 1:1 match saying it’s THAT person.
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.
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.
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.
By biological father was an anonymous sperm donor before the technology to sequence a person’s DNA for under 10 billion dollars was a thing. They did not give their DNA to ancestry. Their sister did, having no clue that her brother had donated. Yet ancestry has matched her to several nieces and nephews, outing her brother’s history to his sister and the children who were never supposed to have access to that info. It’s not just your own information.
Similarly, one of my half siblings suddenly found out that his dad wasn’t his birth dad.
Anyways, he happens to be cool with the fact that he suddenly had contact with offspring who weren’t supposed to know who he was.
But our DNA is interconnected. It doesn’t just belong to one person.
Happier version of your story:
My dad an I both did 23 and Me. He made sure I knew he had done sperm donation before I met my mother just in case something came up. Well, it did! I have two half siblings from his donations! I think it’s cool, and I think he’s happy to know he helped two families have a child.
I have a lot of half-siblings. One set of two, one set of 3 (I’ve only met the oldest), one only child, there’s me and my two full siblings, and the donor’s actual child. There’s more out there. Another we matched with their child, but I don’t think we even know their name. Been pretty cool meeting all of them and the donor. Its actually been a happy experience, but one certain people had no choice in making.
It’s interconnected, sure, but I think you’d have an uphill battle that it doesn’t belong to that person.
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.
Get outta here with your logical conclusions!
I like your take thank you!
This isn’t even new. Why are we posting things from over two years ago and treating it like some sort of revelation?
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.
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 doesn’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.
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.
If problems arise, you can always ditch your name but not your DNA. Obviously, those are worst case scenarios but I’m personally worried about DNA being used by insurance companies, being coupled to credit scores, used for higher education admittance, etc
I appreciated the dive into how investors think about these things, basically how this was the plan from the beginning, and how their entire product line up till this point was just a ploy to build up a database for their real moneymaker: genetics research and biotech.
Blows me away how incredulous people are. So many people paid money to give away possibly the single most valuable piece of information about them.
surprisedpikachuface
No shit sherlock
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.
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!
I’m pretty sure I’d end up owing them money in this situation…
