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this post was submitted on 06 Dec 2023
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Agreed unfortunately. An important thing in US law that people often don't know is that in most cases, you need to prove that you were damaged in some way. Unless the company broke a specific law, you probably just have to accept it until you have problems relating to identity theft. And even when that happens, you'd still need to prove that the the attacker used the lost 23andMe data.
I personally don't understand why people use these services in the first place. Let's all let some private company that we know nothing about build an absolutely massive database of people's DNA. And let's voluntarily do it and even pay them for that "service". Sure, that sounds like a good idea. What could possibly go wrong? Hope your minor curiosity was worth the massive privacy invasion.
In my case, I went through 23 and Me because 75% of my DNA comes from sources unknown. No idea who my father was or my maternal grandfather. So being able to fill in those gaps as well as helping to determine medical risk has been very useful.
Thank to the American healthcare system's lobbyists, if a company sequences your DNA, they can't give you information related to health.
Which is why 23andme has a fraction of the stuff they used to.
I paid $5 to a third party to take my raw 23andme data and output a very nice html file (not online, in a zip file) that checks against common mutations for all types of shit. Not sure if they're still around, but they automatically delete your data once the HTML is sent out, if I want it again I don't have to pay again, but I do have to send them the raw data because they don't have it anymore.
Because they didn't sequence it, they can give me all the information without having to be a "healthcare provider" like 23andme would need to be to tell me the same info
Building a massive collection of DNA is a really good thing from a research standpoint. Plus, it's helping solve a bunch of murder cold cases.