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Re:23andMe Is Monetizing Your DNA the Way Facebook Monetizes... by kbenson on Sunday July 10, 2016 @08:30PM (#12068038)
> Personal liberty absolutely ought to trump considerations here;

Not before we actually know what those considerations are. It's prudent to error on the side of caution, but erroring on the side of caution doesn't mean we ignore the issue after that. If there's serious public good that can be brought about, we should investigate that and explore ways it can be achieved acceptably.

> one reason I haven't sent a DNA sample to 23andMe, etc., is because I can't control what happens to my data after that point, and I'm not even sure if I can find out.

Yes, and I agree with this outlook. When I said it would be a good thing to legislate, I meant that we should investigate ways we can implement clear rules such that we can all benefit from the useful medical information while protecting privacy as much as possible. We already do this to some degree in the US with HIPAA laws, which facilitates the sharing of client medical information between medical professionals but also comes with a bunch of very specific safeguards and requirements.

Re:23andMe Is Monetizing Your DNA the Way Facebook Monetizes... by kalefranz on Sunday July 10, 2016 @10:02PM (#12068392)
>> > one reason I haven't sent a DNA sample to 23andMe, etc., is because I can't control what happens to my data after that point, and I'm not even sure if I can find out.

https://www.23andme.com/privacy/

Research participation

23andMe offers customers the opportunity to participate in a new way of conducting research (at home and online). Participating in our research is completely voluntary. Customers can choose not to consent to research and doing so will not impact their 23andMe experience.