> Did these 14 million users all actually provide informed, active consent?
Virtually impossible, even without preconceived notions of this company's ethics (which... should be obvious), because it's actually very difficult to get informed consent. Not only does it take longer and more work to get the consent, you'd actually have to work pretty hard to define a system that >90% of people would consider true informed consent. There's no blueprint for it in the corporate world. The default consent-getting is so bad that even doing a bad job can look amazingly progressive in comparison.
It's not clear to me this takes automatic effect, and actually states "If you agree to this consent" - I assume that users are given the option to consent or not?
This seems to be the usual TOS - https://www.23andme.com/privacy/
and it says "We will not share your genetic data ... without your explicit consent."
So the news here is "Drugmakers are set to pay 23andMe to access consumer DNA for consumers that have given their explicit consent to do so". Maybe the fact 23am is getting paid is considered a sour note here, but it doesn't seem this is otherwise underhanded.
No, there's nothing underhanded here. 23&Me has never hidden its long term intention to use genetic data, from informed consent customers, to help solve diseases. To me the idea was obvious from before their founding, and it's amazing how long it took them to get to this point.
Virtually impossible, even without preconceived notions of this company's ethics (which... should be obvious), because it's actually very difficult to get informed consent. Not only does it take longer and more work to get the consent, you'd actually have to work pretty hard to define a system that >90% of people would consider true informed consent. There's no blueprint for it in the corporate world. The default consent-getting is so bad that even doing a bad job can look amazingly progressive in comparison.