Continuing the discussion from Economics of paying app devs for GETs:
So you are saying you would give them the right to copy, as long as they don’t redistribute those copies?
That really reminds me of copy-right, but maybe I’m confused…
Your medical info would also be worth nothing (i.e. a pharma company or local newspaper could “return” you the files after they used information contained therein).
If you trust your healthcare provider, why do you need a contract with them. Do you have a contract with them or not?
A contract can be negotiated, sure. You can ask your hospital to modify your contract to mandate that just your data are additionally encrypted with OpenPGP and your public key. Good luck with that!
They’ll most likely suggest you to find a better hospital. But at least you’ll have tried!
A contract can be accepted or not, so your acceptance is in fact a Yes or No statement. No one forces you to click on I Agree.
As someone who’s invested in making a series of artistic photos, I don’t give a rat’s ass about someone’s reputation.
I put the content up there and require people to agree or not. If they don’t, they won’t see the content. If they do, they’re obliged to stick to it or otherwise I can ask for restitution (in your world, “rob them”).
You say you don’t empathize with someone who creates “artificial scarcity”, but you yourself create artificial scarcity of good genomics and other data that could be useful in research by not sharing them. If your healthcare provider sold your “personal but not copyrighted” data to Pfizer, you could give them just 1 star in your review. I’m sure that would make them loose sleep.
You probably even agreed to their T&C’s by way of electronic contract which you “consider a joke”, but you still think you somehow have certain rights with respect to data you gave them without any valid contractual relationship that clearly defines each side’s rights and obligations.
I’m not claiming the approach I describe is correct. I’m only trying to show you that you can’t have it both ways.
Sorry but “information wants to be free, unless it’s my own” doesn’t make sense.