This was an obvious outcome when they were going to IPO. When it was announced they were going public, I exported all of my data and had all of my records with them destroyed.

Then I made a little bit of money on their stock and got out of that too.

As a general rule, when someone says that data is anonymized, they're one part lying and one part clueless. It sounds great when they say it, but ultimately it's bullshit. Maybe if we started calling claims like this lies when they were made, a few more people would pay attention.

Anonymized as in they deleted the "name" field.

What, you don't think that's enough? /s

H-h-how? HOW? do they ‘anonymize’ DNA?!?!

If you really curious, it is possible depending on the sections of the DNA being shared and how aggregated they are. Not saying that this will be the case - it's quite likely that this sale would be done prioritizing value instead of privacy - but it is possible. The key part is to not treat the whole DNA as a data sample, but specific sequence sections, as isolated as possible.

And the Netflix example is instructive but not super relevant here. If you already have your SNPs in a public database out there, then yeah 23andMe might not be able to effectively anonymize your samples; but you don't (I hope).

I tried telling my family this from the jump but half of them have used these services. Now me and all their descendants are fucked over because they just had to be idiots. It's extra stupid because we already have our genealogy on both sides going back to like 1500s.

When we said that data was the new oil in the 80's, nobody listened.

They still haven't listened, but if you own stock in those companies at least it's profitable.

Be quite amusing if we could poison their well by persuading a great many people to send in samples from other life forms.

Probably easier, cheaper & faster to make their data unusable via other means though.

I am guessing this is only for the people who opted in to having their data shared for research.

I'm waiting for the part where the US insurance companies are discovered using that data en mass to increase premiums and deny coverage.

That's going to be my "I told you so".

Don't expect much lol, when I pointed out that this was inevitable the most common response was "who cares?"

Privacy is dead mainly because your average person doesn't actually care about it

Were they of the idea that when you tick the "my data can be used anonymously for research" box it meant that their data WOULDN'T be used anonymously for research?

No no, just repeat after me: "I can say I tOlD YoU So!" You don't want to be caught using anything resembling logic when it comes to pharmaceutical companies.

Do you realize that you don't need to volunteer at all? Do you know that there was a rape and murder case that was proven using data from a similar (same?) company? They found a bunch of people with DNA similar to that from the rape kit and went on to find their common relative.

The story above may sound good. But it won't be too hard for medical insurance companies to deduce your approximate genetic profile based on the samples submitted by your relatives.

Even worse, it doesn't take a lot of genetic material these days to profile you. The PCR technique (the same used for Covid-19 screening) can amplify samples. You may have submitted a blood sample at some point in the last few years. How would you know if a tiny bit of that was siphoned off to create an exact genetic profile of yours?

Only way I'm doing it is if I assembled the machine from a kit and got to inspect the source code myself.