this post was submitted on 14 Jun 2024
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Privacy

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With 23 and Me getting into selling information for added revenue, the privacy of DNA testing providers makes me not want to use the service. Can anyone recommend a privacy focused DNA testing company that has a good track record?

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[–] [email protected] 18 points 4 months ago (1 children)

Isn't the whole point of those to take private information, cross-reference it with other stolen private data and give you results based on that? Doesn't seem so compatible with privacy.

[–] [email protected] 4 points 4 months ago (1 children)

Yea, I don't really see a way to do this with any privacy

[–] [email protected] 8 points 4 months ago (1 children)

There is almost certainly a way to do it which a focus on privacy. That's just a technical problem. But nobody's going to profit from it so it will never be developed.

[–] [email protected] 4 points 4 months ago (1 children)

I think the key is anonymity, which is different from privacy. It's a given that the only way for that service to work is share and cross-reference information. But if you can somehow design it in such a way that the data can't be traced to its owner if stolen, that might be an option.

[–] [email protected] 2 points 4 months ago* (last edited 4 months ago) (1 children)

Yeah, that’s what I was asking more. Sorry I wasn’t clear. I have some family history of genetic issues and I was looking at a test to try to see if that was a problem in me. I just didn’t want it sold to every company under the sun.

[–] [email protected] 2 points 4 months ago* (last edited 4 months ago)

Use Ancestry.com instead. Ancestry asks if you want to be part of x y z. Say no to all. Also opt for Ancestry to destroy your sample. Once your test is completed, download the raw data file. Then request your data and account to be deleted.

You can then use services like Promethease to give you information on any potential genetic issues.

I don't know if 23 and me offers the same level of privacy as only have experience with Ancestry.com.

Make sure whichever service you use, you read the privacy statement.

[–] [email protected] 4 points 4 months ago (1 children)

By the kit with cash, set up a digital identity using a burner email, maybe even a burner cell phone. Mail it in from a different city. Only use a VPN to check the results.

[–] [email protected] 1 points 4 months ago* (last edited 4 months ago) (1 children)

Also with Ancestry (dunno if 23&me does it), you can opt out of all their suggested extra opt ins, download your raw data and then request them to destroy your sample and delete your account.

[–] [email protected] 1 points 4 months ago (1 children)

The data is stored forever. There have been warrants from law enforcement that somehow miraculously turned over deleted information.

Cops are using and abusing the system submitting requests for every case, cold or not. Easiest way to get a name is from a giant private database where everyone has sent in DNA samples...

[–] [email protected] 1 points 4 months ago

Why hasn't Ancestry been sued then? I know there were issues around GEDmatch a while ago (never used them) in terms of privacy. Nothing I've read in Ancestry's Privacy Statement says that they can legally retain data after you've requested deletion for an indefinite time. Are you sure it's Ancestry you're thinking of and not another company?