> Have you ever entered your phone number or member number at a business for a discount?
But I can choose not to.
"May I have your email for our records?"
"Thanks for asking, but you may not."
> Personal liberty is important, but it doesn't trump all considerations. If we can actually utilize the information to help research new treatments and further our knowledge of the human body, allowing the collection, and careful protection and anonymozation of the data is for the greater good, and worth the risk Imo.
That's fine, and it brings to mind organ donation, but this should be absolutely crystal clear. If I'm giving them my DNA, I want to know exactly how it can be used, how it will be anonymized, to whom they can sell it, whether I can opt out at some point, etc.
Personal liberty absolutely ought to trump considerations here; 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.
> If I'm giving them my DNA, I want to know exactly how it can be used, how it will be anonymized, to whom they can sell it, whether I can opt out at some point, etc. ... 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.
Do you destroy this information once the owner has chosen to opt out?
The reason I, and I suspect many others, avoid these types of services is the risk of this information being inherited or possessed by an entity that would use this information in ways to which I do would not consent nor approve. This information would not only affect me personally, but also my children.
Germans are more privacy-aware than most for a good reason. I dread a future where an evil government gets a hold of this data and the technology to effectively use it.
> 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.
>> > 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.
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.
But I can choose not to.
"May I have your email for our records?"
"Thanks for asking, but you may not."
> Personal liberty is important, but it doesn't trump all considerations. If we can actually utilize the information to help research new treatments and further our knowledge of the human body, allowing the collection, and careful protection and anonymozation of the data is for the greater good, and worth the risk Imo.
That's fine, and it brings to mind organ donation, but this should be absolutely crystal clear. If I'm giving them my DNA, I want to know exactly how it can be used, how it will be anonymized, to whom they can sell it, whether I can opt out at some point, etc.
Personal liberty absolutely ought to trump considerations here; 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.