In the absence of clear-cut regulation, who should decide on where and how a technology that could change the course of human health should be applied?
  • deafboy@lemmy.worldEnglish
    3·
    3 months ago

    Losing a baby to severe genetic disease leads to profound suffering for families. But the same genes that cause disease may also create human identity and community.

    This is the most cruel and selfish thing I’ve read in a while.

    • jeffw@lemmy.worldOPEnglish
      31·
      3 months ago

      That’s an interesting comment. The Deaf community in particular seems worried about this sort of stuff. Many older Deaf people I know wear even upset about CIs

      • deafboy@lemmy.worldEnglish
        2·
        3 months ago

        Oh, my nick is actually derived from my name, I can hear Ok-ish.

        I’ve only ever seen deaf and hard of hearing people being upset about the implants as a bad movie trope and had no idea it’s a real thing.

        Many older people tend to be sceptical about complicated medical procedures in general. That I can partially understand. If I’ve lived with something my entire productive life, the preceived risks might outweigh the possible benefits.

        • jeffw@lemmy.worldOPEnglish
          11·
          3 months ago

          It’s not just a medical procedure though. The Deaf community is a tight one and they are seeing the next generation slip away. Who will maintain their language and culture?

          • deafboy@lemmy.worldEnglish
            3·
            3 months ago

            I suffer from several chronic issues myself. I have brutal alergies that makes me feel like I’m drowning at least for one week in spring and one week in autumn. I also have a tinnitus, and have to deal with not geting a break from auditory stimuli.

            I get sharing the burden and exchanging information with others. It’s a valid coping mechanism. But I’d never in a million years demand others be born ill, just so they can share the suffering with me. If a piece of culture dies together with all autoimmune diseases, I’ll celebrate it’s demise, and be happy those who come after me won’t have to share it with me.

            When it comes to culture, I’d be open to schools teaching sign language instead of a second foreign language. It’s pretty cool form of communication that can be useful even for the healthy folks. But then you risk the eternal september type of event anyway. The culture would change with sudden increase of users.