Sure, updating patients rights would help but how fucked is it that our system allows this by default in the first placd?

  • half@lemmy.world
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    1 year ago

    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:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6763675/

      • half@lemmy.world
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        1 year ago

        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.

        • x4740N@lemmy.world
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          11 months ago

          This is why companies that make medical devices should be legally required to open source their code and publish it

    • GivingEuropeASpook@lemm.eeOP
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      1 year ago

      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.