If 23 and Me goes bankrupt, they will sell all of the biometric data they’ve collected over decades to the highest bidder. Why can’t the US government step in to purchase the company and establish a public trust?
Because nobody trusts the public and the public doesn’t trust anybody.
I’m surprised nobody mentioned the film Gattaca, which is centered around genetic identity.
As a practical matter, this is less concerning to me than data breaches like the Equifax one where my social security number and everything else were compromised. I can think of ways 23 And Me data can be misused but, aside from police (who could get the data anyway), most of them are kind of theoretical or contingent on technological developments.
Like, 23 And Me data going to the highest bidder is obviously disturbing but I’m not sure it’s an immediate danger in the same way as all our SSN’s being sold on the dark web. I’d rather nationalize credit reporting agencies than the unprofitable ancestry report company.
the people we should be concerned about getting their hands on this data are not like, goateed hackers. they’re banks, insurance companies, recruiters. those are some pretty powerful lobbies
They can wait for them to go bankrupt and buy all that data at discount.
I don’t really want the government tracking our genetic history, either.
Buddy idk how to tell you this…
Why would the government care? Lol they don’t care about a genocide or crippling medical care costs why would they decide to have a moral compass now?
Honestly, the law enforcement implications of the government buying the database is just as scary as a 3rd party. Hell I bet a company buys the data and sells access to the FBI, and local law enforcement for a subscription fee.
Law enforcement already can just subpoena/get-a-search-warrant-for them all they want. Why would they bother with paying a fee?
Cuz they print the money and set policing budgets astronomically high. A warrant requires paperwork and a judge (though FISA made that a joke), just buying it outright is far easier.
You answered your own question. So they don’t need a warrant. For a fee, they can run ALL DNA collected against just about everyone, no probable cause required.
I don’t even know if that would be legal, but that doesn’t matter. The fee creates a little bit of disconnection so both parties can assume that questions of legality are the others’ responsibility.
This doesn’t make it legal either, it just makes it more likely to happen, and slightly harder to prosecute.
Now you’re thinking in capitalism!
Agree 100%
the law enforcement implications of the government buying the database is just as scary as
… governments forming an arms-length secure repository for your healthcare or passport or tax or criminal data with regulations, procedures and penalties around proper or improper access.
Oh shit: they do.
Calm down. It’s in its worst state now, and the non-profit alternatives fail and go under as often as dotcoms (to similar off-sale effect after a period of really shitty security); so the idea of trusting the people you’ve elected to keep the public trust, to keep more of the public in trust, in the public eye and subject to your continued tuning at the voting booths, is a viable option.
The government is one of the entities that pays these companies for data. They’re no more trustworthy than a private corporation.
How accurate is that data? I have a relative who received different results from their family tree than expected. So they sent it in again. Different results. Annoyed, they sent on yet another test. Again, different results. Not slight either, entire additions and subtractions.
They are rife with differences. They have improved over time, but they generally don’t really identify specific ancestry. Rather, they use statistical patterns to correlate self-reported ancestry.
very accurate in my case.
You really need to be careful when taking the samples. No eating, drinking and especially no kissing etc for a couple hours (at least 1h iirc)
Probably works better if you are Caucasian with a long line of ancestors from Europe.
I’m indigenous in Canada and I find that these tests don’t seem to work too well for minorities or indigenous groups that don’t have a lot of recorded history or a large percentage of individuals of the same ethnic background who take the same tests.
Mine said indigenous which I already know … it just didn’t specify who what where or region other than North America.
yeah, in the end they more or less rely on public available information and their userbase to calculate the heritage. If there’s not enough information available, they will not be able to do much.
23andme had a huge user base in the US, and a big one in europe. But outside of that, their historic data gets very broad
Probably took a page out of the government of Canada’s books and said " ehh close enough, they all look the same*
took a page out of the government of Canada’s books
We’re a long way from Queenstown Heights, I see.
I’m terribly sorry. I don’t follow.
Wouldn’t it be just a lot easier to prevent them from selling it in the first place
possibly not
It’s their asset. Idiots signed away their privacy like taking candy from a van. Insert a duty of care.
Why should they?
Anyone who used 23 and Me agreed that their genetic code was able to be used my 23 and Me for whatever they want. Why is it now the job of the government to jump in and give those people retroactive protection.
Because those people never agreed to it being used by anyone else. And it’s in the public interest to protect everyone from their highly-sensitive biometric data being misused.
Unfortunately, everyone who used their service did agree to it. Directly from their Privacy Policy:
Commonly owned entities, affiliates and change of ownership
If we are involved in a bankruptcy, merger, acquisition, reorganization, or sale of assets, your Personal Information may be accessed, sold or transferred as part of that transaction and this Privacy Statement will apply to your Personal Information as transferred to the new entity. We may also disclose Personal Information about you to our corporate affiliates to help operate our services and our affiliates’ services.
https://www.23andme.com/legal/privacy/#data-sharing
Whether this will hold up in court is a bit murky. But without a large, laborious court battle, they can and will sell the data and they are “legally” allowed to
Also interesting is the language they used in the email they sent me after I requested account/data deletion:
We received your request to permanently delete your 23andMe account and Personal Information. The following apply when you submit your deletion request:
- If you chose to consent to 23andMe Research by agreeing to an applicable 23andMe Research consent document, any Research involving your Genetic Information or Self-Reported Information that has already been performed or published prior to our receipt of your request will not be reversed, undone, or withdrawn.
- Any samples for which you gave consent to be stored (biobanked) will be discarded.
- 23andMe and the contracted genotyping laboratory will retain your Genetic Information, date of birth, and sex as required for compliance with legal obligations, pursuant to the federal Clinical Laboratory Improvement Amendments of 1988 and California laboratory regulations.
- 23andMe will retain limited information related to your deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request, for the establishment, exercise or defense of legal claims, and as otherwise permitted or required by applicable law.
The first bullet point makes sense - you agreed and they already published something, so too bad. The second bullet is doing the right thing. But those third and fourth bullets sound like they don’t really have to delete anything, and they’ll keep a bunch of data even if you ask them to trash it. I asked them to trash it anyway.
Thanks for posting this.
While my first point may have been flawed, by second still stands.
I definitely agree with your second point. And I find it ridiculous that a company can ever claim to “own” your genetic information. It’s why I’ve never dared sign up for any kind of genetic ancestry sites. I can’t give that personal of information away for free, let alone pay for it to be taken
People were presented with that in the contract but I think it’s fair to argue they didn’t comprehend that their genetic data could be used punitively to deny them preferntial health insurance, a job or a loan… once this data is in the hands of slimey people it’ll be used like everything else that’s illegal to use for those purposes but “public knowledge” so the fucks use it anyways.
This data is dangerous to public well being forever in extremely scary ways as it could be leveraged on future generations that did not consent to this contract as well with statistics.
I think you’re correct about people being more careful with what they sign but I think you’re underestimating how much in the public interest this is.
Having ownership of something also implicitly gives you the right to sell that thing. Unless 23andMe explicitly stated in the contract that they were under obligated to never share that information. I highly doubt the had anything like that in the contract because, well, here we are.
Also, 23andMe afaik is not a medical association, so they likely aren’t bound by things like HIPPA (idk if specific genetic encodings would be included in that anyways) to protect information.
That’s speculation, not fact, and I also don’t agree that owning a thing necessarily means you can sell it in an unrestricted/unregulated manner (guns, tobacco, as well as other sensitive medical info can’t just be sold willy-nilly)— especially when the “it” is sensitive biometric data whose originators never agreed to share it. That’s the problem when you and the greedy corporations you’re defending assume implicit consent rather than to ask for it: it’s damaging to the public and invades these people’s medical privacy in the name of profit.
And whether 23andMe should be subject to HIPAA laws is debatable at best.
They DID agree to share it.
Should that have been an option? Probably not, but now you are talking about legislation with wider implications, not some half baked public trust to protect a small group of people.
There are other databases of genetic code out there you know. The FBI can potentially accuse you of a crime based on your cousin uploading info to a genealogy website.
They DID agree to share it
I saw in another comment.
That doesn’t negate the public interest in protecting such data, as I have said.
Besides, that clause may not hold up in court.
All the more reason for broader legislation than a half baked idea about buying just this one database.
They did agree to share it but their children didn’t and a database this large is likely to have significant predictive effects on generations to come.
I couldn’t think of any public trust that’s going to benefit to a buy out like this.
To me, it totally makes sense for a private entity/ corpo to handle private data [with consent] from its clients.
I see this as more like the old 23andMe had a private service going on that can’t the public sector doesn’t. It doesn’t make sense for the government the size of USA to prioritize/suddenly adjust policies and provide the same service.
What could be possible is for local governments to step up via public petitions – but even that could be a stretch in terms of cash-in-hand.
