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Drugmakers Are Set to Pay 23andMe Millions to Access Consumer DNA::GSK will pay the DNA testing company $20 million for non-exclusive access to genetic data.
I see no problem with that. Idk what’s newsworthy here tbh.
The problem is that just because you are ok with sharing your data (even if you don’t understand the potential consequences), your close family and any decendants aren’t able to consent or not consent to their shared genetic data being given to these corporations.
How would you feel about your children being unable to get insurance coverage because a close relative used the service and the insurance company decided they were at too high risk for expensive medical problems due to similarity of genes?
Just pissed off at the insurers, as usual. But seeing it as a data privacy issue misdirects from the actual problem, which is the genetic discrimination and lack of proper regulation (if that would to ever happen). We don’t need to go to hypothetical scenarios of insurance companies scavenging for genetic data - they could simply start demanding genetic tests upon sign-up, which would void the whole “data leak through relatives” discussion and give them a reliable and legitimate dataset.
To be clear, this is a made-up scenario that would be illegal under current US law.
Companies break laws all the time. The punishment is frequently small compared to profits from the crime.
Vague nihilism doesn’t dispute what I said
The law here is inconsequential. The only protection that is certain is for the data not to exist.
It’s very much not.
Are you sure?
Yes. The issue you pointed to is being investigated after all. And there are potential damages if they are found to be violating the law.
Did it potentially being illegal actually stop it from happening?
It does stop other things from happening. So how do you square that circle? Or hopefully you can see that your simplistic thinking isn’t terribly useful?
You don’t need 23&Me to do sketchy stuff for this to happen. They’ll just get your DNA from another blood test. They could simply provide a sizable discount to those who enroll and make the premium for “non genetic” insurance rather high in comparison.
It’s one of the most stable physical data formats. It’s not hard to get someone’s DNA, nor is it hard to analyze these days. You also don’t need DNA to discriminate; they can just find parallel traits and use those.
I dunno, none of this worries me that much. DNA is not that special in my mind. I leave it everywhere I go. It’s not private data - most people just don’t know how to read it.