I can't imagine what it's like to live with epilepsy, nor to have a debilitating disease reenter your life after you'd become accustomed to its management. In her position, I imagine I would be doing everything I could to regain access to life-changing technology. Sympathy for Rita Leggett doesn't make this story "dystopian," nor is it a violation of anyone's rights.
It was a trial! All participants agreed to have the device removed. If they didn't, they'd be walking around with unsupported hardware in their brains, because the system that hardware was connected to was dissolved. Representing this legal outcome as a human rights violation is a predictable dilution of human rights.
Ienca likens it to the forced removal of organs, which is forbidden in international law.
There's a vital difference between the removal of a body part and the removal of a tool you agreed to host, on condition of its release, before changing your mind. NeuroVista used novel technology to make meaningful progress in the treatment of epilepsy! Our response to this should be to encourage others like them, not to build bureaucratic restrictions hindering new innovators.
Companies should have insurance that covers the maintenance of devices should volunteers need to keep them beyond the end of a clinical trial, for example.
Who would insure this requirement?! Indefinite support of novel technology? Be serious. This article absolutely breezes over NeuroVista's bankruptcy like it's a little inclement weather. The fact is that biotech research is nearly illegal by default. Try to restrain your distaste for industrialization long enough to imagine starting and running this company:
The idea that because it's not flesh and blood, it's not a vital organ, seems to becoming increasingly outdated as it was clear that this woman's life was transformed in a way that enabled her to be more "normal" (there's probably a much nicer way to say that but I'm blanking.)
Removing it should be treated the same as ripping a prosthetic limb away from a patient.
The issue isn’t the composition of the object but rather property and contract. The prosthetic limb comparison isn’t bad in my opinion, except this would be an experimental prosthetic limb that patients agreed to test with full knowledge and consent that it could be removed without their permission.
Again, I would hate to be in that position, but if I agreed to it, I understand my legal options would be limited. Again, this isn’t a company ruining someone’s life over a little money, this is a corporation unable to continue operating. Again, please consider the fact that a corporation which can treat epilepsy went backrupt because it couldn’t afford to do business in the regulatory environment of the health industry. I don’t understand how adding more subjective laws with hand-waved economic foundations is supposed to help this situation.
after pharmaceutical trial, if the new compound works, sometimes you have option to continue treatment. here "continuation of treatment" would be just leaving device in place, you don't have to supply new stuff. the real problem becomes maintenance when there's no one to do it. yes, it's unsupported, but it works, as long as it works - maybe there should be a legal option for patient to leave it be in such case
"who should come up with the money" is an issue that comes up even with post-trial therapy using normal boring small molecule drugs (much cheaper per patient)
How did you come to be convinced that the system works without third-party integration and maintenance? What happens if it stops working? What about security? Should we provide liability guarantees to corporations which manufacture implants just to preserve the option of retrading in cases that make us sad?
Of course money is always an issue. Scarcity is always an issue. It's more of an issue at larger scale and with more complex and less understood technology. Ignoring it to chase unsustainable ideals is how we end up with unaffordable health systems. Any position that ignores physical limitations is untenable, and any government that violates legal contracts for subjective reasons is corrupt.
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