I’m concerned about the privacy implications of DNA testing services like 23andMe or AncestryDNA. What are the potential risks of sharing our genetic data with those companies, and are there any privacy-focused alternatives available?
If you’re like me, you could find out at age 38 who your true biological father is, and contact him for the first time. It may spiral you into an identity crisis, wondering if you should change your name and the name of your children. Here’s the thing though, my biological dad didn’t share his DNA. His first cousin did, and I contacted him.
As others have said, because you share your DNA with all of your relatives, it’s already not 100% private. One or more of your relatives has already tested their DNA. The most genetic privacy you can get would be for nobody to know who you’re related to. How tightly do you protect that information? Changing your name would be a good first step.
There’s enough DNA registered to find almost literally anyone in the US that way now. It’s how they caught the golden state killer. A partial DNA match will narrow down 350,000,000 people to less than 100. Then it’s just a matter of gettin’ a box of jelly donuts and gettin’ down to some good old fashioned police work with a game of Guess Who.
If you’re related to anyone that has done a DNA test ever, you’re already in the system.
It doesn’t matter if you use a service or not. Someone in your family most likely has DNA on file, either through voluntary submission, like 23andme, or through law enforcement, military government interactions that require submission. Once a family member is on file, it’s easy to ID you. Many crimes have been solved this way. Point being, doesn’t even matter if you try to keep private, if a nation state or three letter agency wants you, you done. If you’re worried about some company having your data just don’t participate in any of them… pretty much all you can do currently.
You can call me paranoid, but the first thing I thought of when I heard about it was how excited the Nazis would have been to access a database like that when they came into power. Imagine knowing the names and addresses of whatever Undesirables you wanted to single out, and exactly what percentage of “impure” they were. Ethnic makeup information can also be used against you in things like gerrymandering congressional districts to hand select voters and disenfranchise minorities. It’s pretty safe to assume that once your genetic profile has been gathered by a private company, it’s vulnerable to all sorts of bad actors gaining access and using that information. Would you want the KKK or the Proud Boys knowing just what percentage black you are? No thanks.
Someone could build an army of clones of you, launch galactic war, and then you’d be hated all over the galaxy. Assuming you have good genes. Probably they made a bad movie about this.
What was the bad movie?
Battle toads. It was OK.
Not if my clones win.
Then I’m the Godking father of the new galactic empire
If someone launched galactic war using clones of me, I’d be laughed at all over the galaxy.
Those two apparently don’t allow law enforcement access to their databses (yet?) even though I seem to remember they do. But others do:
https://www.nytimes.com/2021/05/31/science/dna-police-laws.html
Just from the title before I read the actual post, my first answer was going to be 18 years.
Insurers get hold of it and disqualify you for health, life and disability insurance based on genetic markers.
All who could have an idea of what to do with it could seek a way to get that data out of every company or gov that have it for their specific reasons, no matter if data was collected lawful or not, or if access to the data is then lawful or not.
- search for source of evidences on crime scenes: if one of your relatives happened to have been (related to crime or just bad luck) at a place where later on some evidence was collected, you might cause trouble for them bcs your data is very similar to theirs and that is obvious to laboratories. depending on the the “later on” current state of technology it could affect relatives more than two or three steps away from you. if you live in a country where law enforcement gives a shit about truth and just seeks for one argument to punish just anyone they can point a finger at, that could become a huge problem for the whole family then just because there was data that could have been abused.
- illegal organ traders could - once they have access to your data - think you or your relatives could be a source of nice income if a client of theirs happen to pay enough. however you will probably never know as the illegal organ traders are unlikely to ring the doorbell to ask nicely for a contract. How much do you think would a richie in personal needs pay for “spare parts” if those who deliver them wants him to just never ask where it came from ? does it matter if such organ teaders could know a “compatible match” by data only? maybe not because they might know tomorrow or someone might put up an AI to do the matching (does it matter if that matching by AI is correct then? i guess such traders don’t really care and their customers probably, but wouldn’t that be possibly too late then?)
For me the latter is actually enough to not willingly give my DNA data to anyone. for no reason. gov might already have it (covid probes had been collected and frozen at least) but actively pushing your data out inzo the world would be insane IMHO.
Laboratories often use Microsoft Windows, Microsoft Active Directory and Microsoft Exchange, thus i personally see no reason to NOT believe that any data they have received once in time would - sooner or later - end up rotating uncontrolled in the hands of uncountable criminals waiting for any chance to make quick or huge money out of it.
Babies, I guess
I would never allow my DNA to be characterized or sequenced outside of a medical setting where strict privacy laws are in place.
In the US, insurance companies cannot discriminate based on your genetic data, contrary to what many people in the comments are saying.
https://www.hhs.gov/hipaa/for-professionals/special-topics/genetic-information/index.html
For now. The US is a victim of legislative capture by corporations and it’s possible that in the future lobbying by insurance companies will open the door to them using some of that data.
They’re spending a lot of money lobbying inside the Beltway to change that. So far it hasn’t worked but it’s only a matter of time.
Or what? A slap on the wrist?
“The penalties for noncompliance with GINA range from $300,000 per incident when noncompliance is intentional and a minimum of $2500 to a maximum of $500,000, where noncompliance with the law is unintentional.”
It’s good that you were able to quote the regulations. You’re not wrong, I’m just apathetic; the question was more rhetorical. To be clear: I don’t have faith that this is strong enough to deter and/or that governing policies have enough teeth to enforce. I’d like to be wrong, but I’m not hopeful.
in terms of corporate expenses for legal penalties that’s barely a disinterested-grunt-from-parent-in-other-room, let alone a wrist slap
That’s just for health insurance though, not life insurance
It just comes down to est. profit margin vs. risk and not some ethics about lawfulnes. If they think they can eat the fines/lawsuits then they’re going to take higher profits until the hammer drops. Especially if it shows short term gains for a publicly traded company.
That said, genetic data is probably not the biggest indicator of how much an individual will cost an insurance retailer (behavior would be better) and i’m not about to sift through HIPPA law to see all that it covers.
My bias here is based insurance company behavior from back when they could descriminate based on pre-existing conditions as well as how any publicly traded company eventually functions. Etc…
we already know 99.9% of your DNA, it’s over
What about the 0.01%?
a rounding error
If anyone in your family starting at like your second cousin and closer have already done DNA testing then the cats outta the bag on worrying about your privacy.
This. Unfortunately it doesn’t matter how careful you are if your boomer parents got curious about whether they’re really 1/32 Cherokee or not. Now the data brokers and glowies effectively have a profile on you by association.
Also remember in most western nations the cops don’t need a warrant to steal your trash from your bins and profile your DNA, or follow you for days and wait for you to drop a cigarette butt or use a straw at a restaurant.
https://www.dnasquirrel.com/ provides some guidance on how to get DNA results while maintaining privacy. I haven’t tried it yet, but I’d like to hear if anyone has.
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