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I should be able to copyright my DNA so they can’t use it without paying me royalties.
If Lays can bother potato farmers in africa about it I should be able to own an organism too (myself)
if you’ve forgotten your log-in info, contact customer service.
If you’ve previously downloaded your data, you can use that to help.
maybe it would be helpful if someone leaves some comments on how to delete olyour 23andme account and revoke as much of your data from them before they flop
US government should buy them, not for the data, but the research and disease information. That was the most eye-opening thing about the results. Until I got results, my family had no idea that we carried the CF gene.
CF being short for what, in this case?
Probably cystic fibrosis
Some countries, like Finland, already started collecting their population’s DNA sequences of willing individuals for research purposes.
And as far as I’ve researched it is nowadays very hard to deny the finnish biobanks of access, storage and sharing of your collected samples. Which are used as a marketing leverage to honeypot healthcare investors and researchers to Finland from abroad by granting access. The sample data is “anonymized”. I would like to opt out, but it is made so hard that it is generally impossible. Nobody asked if this is okay to us or not. And we are talking about private data that was collected for national research.
The least the legislators could’ve done for the participiants would’ve been to make an effective way to opt out from the databases, and deny all personal collection in the future. No such general solution available.
Disgusting from privacy point of an individual. And alarming that your state does something like this.
Let’s break this down a bit:
There is a service that people are likely to use only once. Send them a DNA sample, they sequence it and send you a report. It is highly unlikely that customers are going to have their DNA sequenced repeatedly. The company fails to introduce any other services that lead to customers sending them more money.
This means a revenue curve that goes up, plateaus, and then drops back down.
It was all right there to begin with. The “good while it lasted” curve doesn’t take a lot of imagination.
Great. Now how do I get them to delete my data and account?
That’s funny, you paid to give them your data. They get to keep it now, that’s what you agreed to.
Not funny, it’s fucked up is what it is. Don’t blame consumers for a companies shady tactics.
Consumers are fully to blame, though. Thats basically like selling your entire web browser history to a company so they can tell you what your personality is. Like, did people actually think these companies weren’t gonna sell this data sooner or later? State of capitalism.
What a bunch of libertarian bullshit. Every layman can’t be expected to be an expert on literally everything so as to make sure they don’t buy or consume a product that will hurt or damage them in some way, or do business with a corporation that will screw them over. This is literally the reason government exists.
You do not have to be an expert to know you shouldn’t willingly give a non-medical company your entire genetic map. This is common sense, but perhaps not for people like you who thinks the gov exists solely to protect citizens. Also very confused how my take is “libertarian bs”? I swear more than half the people using this website are truly insufferable.
People like me? I would never do such a thing. That doesn’t mean I’m going to blame people who did, for the actions of avaricious capitalists.
It’s really easy to not be a scumbag.
And for the people that their doctors reccomended it to them? It’s their fault for trusting their medical provider? No. You should hold these corporations accountable for their shitty behavior. I guess people should stop buying oil & gas because that is killing the very planet they walk on. Oh wait! They can’t without an alternative that the government could easily provide! The company didn’t need to do shitty things in the first place. Fuck capitalism and fuck companies.
If you trusted the literal definition of you to an American company, after two centuries of American companies proving no capitalist entity can be trusted, you fully deserve everything that happens as a result. And I do mean everything. If a random state actor clones you after purchasing a license for your DNA, and replaced you with that replicant, you deserve it. You agreed to those terms.
You my friend are an idiot. I already said this above but what about the people who trusted their medical provider who reccomended this service to them to find a proper diagnosis? They should just get fucked for trusting a professional in the field. We fucking rely on companies to a fault. It’s ass. we could you know blame the company for the shitty acrions of collecting this data rather than the average ignorant consumers. That’s like blaming the person who told you your significant other is cheating on you for ruining your marriage, or even blaming yourself. It’s asinine.
I’m sorry they were dumb enough to trust that this time, a company would totally not do the worst thing possible, after decades on decades of every single company doing the worst thing possible, including the company employing their doctor.
That’s a truly awful take. Especially for people who have since learned to be more mindful about their data. We need solidarity to fight corporations, not punitive treatment.
I really didn’t expect this when I used them 15 years ago.
I did and thus didn’t use them.
I hope it gets settled in a way for you, though. Should be outright illegal
which means the DNA of 23andMe’s 15 million customers would be up for sale, too.
Wild to me that this isn’t categorized as sensitive health data you aren’t allowed to sell.
HIPAA does categorize genetic information as protected health information: https://www.hhs.gov/hipaa/for-professionals/faq/354/does-hipaa-protect-genetic-information/index.html
That said… it wouldn’t surprise me if all of that data gets sold right before 23andMe tanks, the higher-ups take the cash and split, and there isn’t much left of a company to fine. Company tanks and that’s the end of it.
HIPAA only applies to Covered Entities. 23andMe does not meet the HHS definition of a Covered Entity.
https://www.hhs.gov/hipaa/for-professionals/covered-entities/index.html
Owner can’t be sued for illegal acts while it was still running?
Disclaimer: I am not a lawyer.
I don’t know.
If a company is dissolved before lawsuits or charges are filed, the argument could be made that the entity in question no longer exists and the filings are invalid. Just like you can’t sue somebody who’s dead. It might not hold up in court but I wouldn’t put it past some very expensive lawyers to try it anyway because it might work.
This article says that “it depends.” There might be a period of time after a company dissolves that it can still be sued, namely, if the legal process to go about it wasn’t followed precisely. If there are no assets remaining sometimes the former owners can be sued. There is also the question of whether or not you’ll spend more on a lawsuit than you’ll get from the settlement.
I just realized something: Most of the time when talking about stuff like this, people seem to implicitly be talking about getting some money out of it (as punishment, maybe). Rarely do folks ever talk about suing for the express purpose of preventing the thing (in this case, selling customers’ genomic information to third parties) from ever happening.
This article talks about suing for undistributed assets. Suing to get your genomic data back and verifying that it’s been destroyed before it could be sold to anyone else is a possibility. It also talks about suing shareholders; if 23andMe is being delisted that seems like a legal gray area to be exploited: If a company is delisted are there still shareholders? Logically, yes (people hold worthless shares of stock in a company that doesn’t exist anymore) but legally? It might be state-dependent as this article suggests (per Favila v. Katten Muchin Rosenman LLP (2010) 188 Cal.App.4th 189, 213).
Maybe under a quiet title action to get the genomic data back?
It’s America - your data and privacy do not matter right now and the septuagenarian congress will only look at regulating this 150 years from now
I always wanted to check out my genome, but never did so because of shady companies like this.
Is there any genome sequencing service for consumers that actually respects your privacy? Especially for full genome sequencing.
This site walks you through how to take a DNA test anonymously. That’s as close as I’m aware of that you can get to privacy.
That’s cool, but seems kind of pointless, considering you can be easily reasonably deanonymized if your relatives take a DNA test. It doesn’t address the main issue of your genetic information being used commercially.
I’ve had bots scouting for such a thing for a couple of years. So far, we haven’t found any that aren’t way sketchy. Your best bet might be to social engineer the folks at a cellular biology lab at a big college or something, get them to sequence your DNA, and have them copy the data onto a flash drive or something. Then the trick is finding somebody who can analyze the data and make sense of it all.
I think the safest bet would be to get a PhD in medical genetics and manually go through your data base pair by base pair
Same. I’d love to know any privacy-respecting companies…that is, if they even exist.
Well, Swiss has some companies and strict laws to handling of health data (including DNA). But i dunno if you can just send your sample via package.
Yeah, I imagine the USPS would would have some concerns about transporting biological samples across international borders. Lol.
Luckily I signed up with fake details (name, address, etc.).
It doesn’t help much if your cousins signed up with their real name. If you are male, they can figure out your surname even if no close relative submitted samples: https://en.wikipedia.org/wiki/Surname_DNA_project
Spelling out all the potential consequences of an unknown party accessing your DNA is impossible, because scientists’ understanding of the genome is still evolving.
Honestly, this is something that I hadn’t actually considered before. I’m almost embarrassed, since I like to think of myself as someone who is always thinking about how my data can be misused, haha.
It’s not just about data that can currently be used unethically; there’s also the fact that someone may figure out a way in the future to use today’s data unethically. This is definitely true with something like your DNA, which is so complex that there are infinite things to learn from it. But it can be true of more simple things, too. There’s no way to predict what someone will be able to extrapolate from seemingly harmless information today.
Plus this applies to your family as well. DNA is shared and by you giving it up you give up info about those related to you as well.
