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Is anyone having trouble downloading their data? Some data, such as "Raw Data", "Imputed Genotype Data R6", and "Phased Genotype Data" need to be requested, but I haven't heard back from them yet. Would like to download everything first before requesting deletion.
Still, I figure I have a few trillion backup copies… albeit in very raw format
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But it creates legal grounds for lawsuits if they don't.
Sure, you can sue the hollowed out shell of a bankrupt limited liability corporation that will soon have no assets for a court to sieze for whatever paltry damages a court finds.
The correct timing, appears to be that 23andMe would have had an opt-out, blocking the selling or transfer of their data. That also should have included confirmation of data deletion, if requested. Since none of that existed, the options for users are quite limited. In fact, many would have participated in 23andMe Research, so their data was likely going to wherever long before.
To be honest, this is more like "requesting the data to be deleted". There's nothing that guarantees that the personal information will be physically wiped out of the hard drives used to store them.
Is anyone having trouble downloading their data? Some data, such as "Raw Data", "Imputed Genotype Data R6", and "Phased Genotype Data" need to be requested, but I haven't heard back from them yet. Would like to download everything first before requesting deletion.
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I'm not sure if there are any current laws that prevent this, but there are quite a few laws that would prevent an advertising company from getting this information. Like most things, if we're going by a company that doesn't work within the law, we're already going to lose. What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for th…
> What's to stop someone within an advertisement company from reaching out to someone in healthcare IT, and offering a large amount of money for this information? Trying to link this physical data to an online presence is probably not worth the risk and amount of money and time (at this current point in time). HIPAA works because it comes with personal liability . Anyone who sells/leaks/loses HIPAA data gets hit with…
Like other privacy regulation, it’s there to protect the industry and their business/commercial interests.
Barriers to access mean less controversy, fewer lawsuits, fewer investigative news stories, fewer insurance disputes.
I’d say it’s also designed to reduce contamination or adulteration of data: if every facility needs to do new testing and new evaluation then they can be sure they got the results they need, instead of taking some rando’s word for it.
HIPAA isn’t the most onerous barrier to personal access to records, but it’s a huge hassle for someone who wants it opened up for family, friends, and other entities because those forms are onerous. With good transparency in patient portals, authorized users can manage a lot on their own.
Also, good luck reading anything but textual notes, because imaging and other medical data is often always distributed in proprietary file formats that don’t simply import into Gimp!
The distinction isn't super important, but 23andMe doesn't have your whole genome, just some specific locations from it. Roughly 750k base pairs or so. https://www.quora.com/How-much-of-the-genome-does-23andMe-se...
Enough to be denied insurance, have job offers rescinded, or be targeted by scams. And they don't even have to have your DNA. Just a close enough relative will do.
Some will be easier than others, sure. I'm trying to decide how "safe" my data is, since I created a single-use gmail account, with fictitious name, and paid for it with a gift card. I was afraid that some information in there might lead to being uninsurable, so I decided to row away from the rocks. Thankfully, my genetics didn't pop up any red flags, knock on wood.
I guess if you signed up using your normal e-mail address and your real name and used your credit card, you can still take the Shaggy defense ("It wasn't me"), but I suppose at that point they could ask you to prove it. I mean, most businesses aren't obligated to do business with you, for any or no reason at all.
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To what extent and using what method is it "de-identified"? Plenty of such schemes are very easy to circumvent, especially with a large enough pool of data. Given the nature of genetics in particular positively identifying a single case can be used to unmask whole families. In particular depending on the anonymization this would be a task suited to 'AI' very well.
https://www.23andme.com/about/individual-data-consent Basically, if you imagine this as a table of "user's name, date of birth, and address" keys mapping to genomic and other data, the key was replaced with a random identifier that could not be trivially joined to recover the user name, date of birth, and address. These systems are not robust against motivated and capitalized adversaries.
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> It is selling de-identified, aggregate data Just a note that re-identifying aggregate data is a whole field of study that is decently successful.
“In principle” but In 20 years do we gave any cautionary tales? i don’t and follow this area somewhat. Homomorphic encryption is pretty hard to crack.