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.
https://www.23andme.com/privacy/#drawer-researchparticipatio...
Customers can opt in or opt out of our research at any time. If you opt out, we will discontinue using your information for research within 30 days.
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.
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.
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.
> Do you really compare DNA and phone numbers?
I think you've let the prior context of the discussion influence your interpretation of my point. My comment had two two main points. First, that we've never really had a system where transactions did not convey some additional information about us, our preferences, and the market (what's more, "my data" is an interesting and often under-explored topic, IMO. If data wants to be free, and you go spreading it around, do you really have a singular claim to it anymore?). Second, there are competing interests of the individual and society when we are talking about aggregating data that might yield substantial benefits for people in general (as in the human race). We've made considerations about this before, such as with vaccination.
I'm not making a case that a private company should be able to keep all info about your genetic makeup and profit from it privately. I am taking a position that we should carefully consider the possible benefits of aggregating genetic info, the possible downsides in loss of privacy and other possible problems, see if there are ways we can increase the benefits and/or decrease the downsides, and try to make an informed decision, with the minimum FUD possible.
Have you ever entered your phone number or member number at a business for a discount? You think they aren't tracking that? What about just tracking you by some hash of you CC info?
I'm sure there were 19th century New York shopkeepers that noticed a particular influx of specific immigrant nationalities in their shops, and may have inquired further and tailored their goods slightly.
Every good business owner has used info about their customers to improve their business. It's impossible to have a transaction without leaving some information.
This, like most "new" things enabled by technology, is a matter of scale. We need considered and appropriate limitations to protect us, not knee-jerk reactions that actually cause harm because we haven't considered everything.
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.
This is a good thing to legislate though.