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this post was submitted on 27 Sep 2023
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I feel like the issue is more nuanced than this scenario you've provided- there are legitimate concerns as to whether your personal data can be ethically handled by a chain of organizations and individuals that have no linkage to you and see you as nothing more than income. That's aside from the fact that selling personal data raises moral concerns akin to those raised by the usage of DNA-testing services as they relate to things like healthcare coverage, and blood quantum in tribal nations- issues of not having control over who can and cannot access personal, private information that could potentially be used against you. Once that data is collected, it's effectively impossible to control who has it.
These scenarios are also assuming that everyone handling your data is, at best, a neutral entity. If your personal data is collected and makes its way to someone who would like to steal your identity or otherwise cause you harm, that's a really big problem.
If they aren't above illegaly selling your data, then aren't above illegaly collecting your data, even if you ticked a little "I do not consent" box. I fail to see, how this change can be anything but positive.
Yeah, for sure lol someone could dox me and steal my identity or set me up for murder tomorrow, bad actors are bad actors. My point isn't that the data is highly abusable, though it for sure is, my point was that even the people WHO DON'T GIVE A DAMN ABOUT YOU are exploiting your personal information for monetary gain. In, again, the case with health indicators and the medical industry, the insurance companies don't give a damn about you outside of your worth and your potential liability. There doesn't need to be any one person responsible for that fact- it's just the way the system is set up. So if they get data showing that I'm prone to leukemia genetically, then yeah, they're going to make it impossible for me to get insured at a reasonable rate, because I'm suddenly a huge risk for them.
It's not an exploitation for monetary gain, it's an exchange of services. Do you think those massive servers they got are running for free? Aside from hardware, facilities and electricity, they have to pay programmers, accounting, management, cleaning services, etc. etc.
People have to get over the fact, that this is how the world works - and also the only way the world as we know it can work.
The healthcare industry is not providing you any service by buying your personal data and using it to determine that your rates should be extortion-level high. It doesn't matter that some companies are benign in their usage of your data, because there are organizations who have incentives to act on that data in ways that benefit them, directly at your expense. Do you understand what I'm saying?