Ask HN: Is there a DNA/genealogy site you trust?
I’m really interested in 23 and me and the general building-a-family-tree-via-DNA service, but, like a lot of people, are concerned about my genetic info being later resold.
Is there a service HNers could recommend for the privacy conscious? No, stay away. Even if a company is trustworthy today, it doesn't mean that it won't update its Terms of Service tomorrow/be bought. Really the only answer this thread needs. Companies can be bought and sold and the information they have can change hands and change retention and privacy policies. There's no trustable verification method for knowing, for absolute certain, that none of your data has been retained at your request. There simply is no reasonable way to trust these services. Makes me wonder if there could be a business model, type (maybe nonprofit?), or license that user data would be destroyed in case of a change of ownership. Or maybe even a time-limit on data, like how messengers have self-destruct options. If you want to use it for family tree research you basically have to go to the companies that have the largest databases, because that's where you'll find familial matches (e.g. 23andme and AncestryDNA). 23andme has a better track record of refusing governmental requests than AncestryDNA. In terms of genetic information sharing, none of the providers shares non-anonymized data. 23andme allows an opt-out for sharing anonymized data. You can also do the tests pseudo-anonymously, while they ask you to provide your real name, etc. you don't actually have to do so. You can purchase a test kit at a retail store for cash and register online with a fake name if you wish to do so. I did 23andme earlier this year for the health information. After much deliberation about the privacy risks, I decided the tradeoff was worth it. I looked at the family tree/genealogy data as well, and I was stunned how many of my close relatives were in there. It does depends on exactly what your fears are about how the data will be used, but to some extent the ubiquity of these services means the privacy of your genetic information has already been violated regardless of wether you choose to use them yourself. My approach was to buy a temporary domain with a cash prepaid gift card, register it with a fake name from a VPN, set up email (also via VPN), do the DNA thing (via VPN) with a fake name and an email address at the new domain, download my data (VPN), then delete the account. The only thing linking it to my existing identity is the actual DNA data itself, which is probably insufficient for insurance companies or data brokers to relate it to my existing records for discrimination purposes. But if other members of your family submit their DNA with their real identities, then possibly you can then be identified like how they caught the Golden State Killer. It's true. This can only work for a little while, then all your hard work is gone forever. Your identity is hard-coded. Anonymous is definitely Debby's dad, and Bills cousin. Other datasets indicate that Debby's dad and Bills cousin's name is John Johnson. Therefore, Anonymous is John Johnson. You’re right. I should probably make a point not to go on a multidecade killing spree, given the circumstances. You go to all the trouble to be anonymous and then have a flippant response to a real way your efforts could be undone. I mean, you shouldn't go on the killing spree regardless. It’s an attack that can’t be mitigated; having controlled for all of the variables in my control, the only thing to do about those that are not is make jokes. It also presumes they lied and didn’t delete my data on request. Nah go ahead give it a whirl I'm not sure. Supposedly 23andMe will delete your data completely upon your request. So you could sign up, print your reports, then request deletion. Would they have shared your non-anonimized data with anyone by the time you request a delete? Perhaps through some unspecified 3rd party whose privacy policy you don't know? This was a few years ago, so it could have changed. Supposedly they only shared 'anonymized' data for research purposes. You could opt-in (or maybe out) of genealogy connections. Of course, with enough attributes and cross references even anonymized data is seeming less and less safe.