Why can't a public trust buy 23andMe?
Why can't a public trust buy 23andMe?
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?
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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.
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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.
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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
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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that has already been performed or published prior to our receipt of your request will not be reversed, undone, or withdrawn.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.
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Thanks for posting this.
While my first point may have been flawed, by second still stands.
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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
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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.
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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.
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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.
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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.
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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.
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All the more reason for broader legislation than a half baked idea about buying just this one database.
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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.
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