4 ms·

Government databases should be free for the public to access or restricted only to government entities. Selling to limited classes of private buyers is incredi

Government databases should be free for the public to access or restricted only to government entities. Selling to limited classes of private buyers is incredibly shady.

vorpalhex 6y ago
The original argument for needing to charge for this data was made in the era of Xerox machines and faxes where you literally were paying someone to flip through a filing cabinet and make photocopies or run it through a fax machine. It's why we see like a crazy per page cost and other nonsense - those things make sense when you are literally printing a copy. But in the digital era? The price of duplicating a pdf or a textfile is a few processor cycles and a spot of ram. If you really need to charge for it, charge a few dollars a year as a flat subscription across all systems. Or alternatively, allow someone like the Internet Archive to make it available on their dime.
vharuck 6y ago
There are legitimate cases for approved release to private citizens. For example, the standard for public health cancer research is getting records from state registries. Of course, in those situations, the requirement is that no personal identifiers will be leaked, and it's for the public good.
- travisoneill1 6y ago
  Right but if the records are anonymized, then why can't the public view them. The research is going to be published anyway and then that sample will be public anyway.
  - vharuck 6y ago
    They are not anonymized. We may not always give out things like contact information or fields specifically for joining to other datasets, but we assume the provided data is enough to reasonably identify patients. Age, city, date of diagnosis, race (which can be specific nations for Asian and Pacific Islanders), and the fact they have cancer can be very good clues. If the requestor knows somebody with cancer, it wouldn't be hard to learn other things about them by looking up their record.

Government databases should be free for the public to access or restricted only to government entities. Selling to limited classes of private buyers is incredibly shady.

vorpalhex 6y ago

The original argument for needing to charge for this data was made in the era of Xerox machines and faxes where you literally were paying someone to flip through a filing cabinet and make photocopies or run it through a fax machine. It's why we see like a crazy per page cost and other nonsense - those things make sense when you are literally printing a copy. But in the digital era? The price of duplicating a pdf or a textfile is a few processor cycles and a spot of ram. If you really need to charge for it, charge a few dollars a year as a flat subscription across all systems. Or alternatively, allow someone like the Internet Archive to make it available on their dime.

vharuck 6y ago

There are legitimate cases for approved release to private citizens. For example, the standard for public health cancer research is getting records from state registries. Of course, in those situations, the requirement is that no personal identifiers will be leaked, and it's for the public good.

travisoneill1 6y ago
Right but if the records are anonymized, then why can't the public view them. The research is going to be published anyway and then that sample will be public anyway.
- vharuck 6y ago
  They are not anonymized. We may not always give out things like contact information or fields specifically for joining to other datasets, but we assume the provided data is enough to reasonably identify patients. Age, city, date of diagnosis, race (which can be specific nations for Asian and Pacific Islanders), and the fact they have cancer can be very good clues. If the requestor knows somebody with cancer, it wouldn't be hard to learn other things about them by looking up their record.