I’m concerned about the privacy implications of DNA testing services like 23andMe or AncestryDNA. What are the potential risks of sharing our genetic data with those companies, and are there any privacy-focused alternatives available?
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I can easily imagine a reality where insurance companies have access (intentionally or accidentally) and give you a higher premium because they found something that makes you more predisposed to some ailment.
The above is pure speculation, but it’s only one security breach or bag of money away. It’s never safe to assume that a your data is 100% secure at a (presumably) benign company. As curious as I am regarding certain aspects of my heritage, the fact that I have no control over what they do with the info is keeping me on the bench.
In the US that is not legal per the GINA act. Note that that is specific to health insurance. Life insurance can legally use that data. And laws can be broken often with less penalty than the profit made from violating them. And data can be retained much longer than laws exist so the GINA act could be repealed or updated at some point allowing companies to legally use the data already acquired.
Insurance companies already extrapolate such data from zip code… So it’s not speculation at all that they’d want an even more accurate metric
Basically in today’s world, you’d have less than 1% of actors that would take this data and do something productive or beneficial for you or society as a whole… The other 99% will just use this data to make money on the back of others
I work with genetic data and this sort of stuff is trivially easy to do in an automated way. They could easily run your variants against a known database such as clinvar and broadly deny insurance for a particular pathology if they wanted to.
If they had access to your non-pathogenic variants it also becomes trivially easy to ID you, as non pathogenic variants tend to be random so more likely to ID a person/sample.
Just look at the “monitor your driving for a discount” which th already do.
My insurance company offered $30/year discount if I used their OBDII monitor. Are you effing kidding me? Thirty freakin dollars? I’d need to see a 50% discount before I even considered it.
What always rubbed me the wrong way about those is that they don’t see what I’m seeing. Yes, I slam my brakes sometimes, but it’s not because I’m driving dangerously. Sometimes animal come out of the blue, and what telemetry might show as dangerous driving could just as easily be me saving them money.
That’s why they don’t ding you unless you do it often. If you have to do it often, you’re driving too fast.
Deer season in Pennsylvania has entered the chat. :/
100% this. They already got caught sharing your health data with Facebook. Don’t think they (insurance companies)won’t buy DNA data en masse.
Life insurance companies could conceivably do this already. They sometimes ask for blood tests (among other exams) as a precondition of granting overage.
They often require an exam before they provide coverage, including a blood test (who the hell knows what they do with that?).
This is 100% the dystopian reality we are heading for. Maybe not in the near-term future but, there is no way that eventually corporate greed and shareholder gains won’t reach a point that this has to become the reality. They are simply leaving too much money on the table by not doing it.
I think our only saving grace is that the laws haven’t been defined enough yet to prevent this from happening. But I have to imagine to some degree it already is. Just look at the way driving telemetry is being sold to auto insurance providers in the States already. If the information is out there, someone will get their hands in it and use it to manipulate the price of something.