I write a blog that focuses on public information, public health, and policy: https://pimento-mori.ghost.io/

  • 137 Posts
  • 394 Comments
Joined 1 year ago
Cake day: June 24th, 2025
  • Basic Glitch@sh.itjust.worksOPtoTechnology@lemmy.world•2126: The year data will be controlled by citizens, not tech companiesEnglish
    2·
    6 days ago

    Exactly, so why not demand ownership of our data?

    When you look at data sovereignty in indigenous communities people are already establishing ways to do this.

    What’s even more concerning than social networks, jobs, daily commutes, shopping habits, sexual preferences, political views etc. is health data. Not only is that extremely private, corporations recognize the monetary value is incredibly high.

    https://www.statnews.com/2025/01/16/health-ai-electronic-health-records-hipaa-deidentified-data-market/

    Artificial intelligence models are ever-hungry black boxes that need boatloads of bits and bytes from a wide stream of real-world data in order to produce insights about patients and their care. To satisfy this need, a trove of companies have popped up to buy patient data from hospitals and sell it to those wanting to train AI or do research.

    https://www.sciencedirect.com/science/article/pii/S2667321525001775

    In today’s digital era, data has evolved into an invaluable asset often described as the new oil making its governance especially consequential for Indigenous communities. Indigenous Data Sovereignty (IDSov) affirms the rights of Indigenous peoples to govern, control, access, and benefit from data that derive from their peoples, lands, and knowledge systems (Carroll et al., 2020). This principle has direct implications for population health because data governance influences how priorities are defined, how prevention and care strategies are implemented, and how health outcomes are assessed across communities (Rhodes et al., 2023). A long history of exclusion from decisions about data collection and use has produced exploitation, misrepresentation, and persistent mistrust in data-driven health initiatives (Fox, 2020; Mello and Wolf, 2010).

    There are some models of data sovereignty where people are being given direct control of their health data, and it cannot be legally used for anything without their permission. Even if it’s granted permission to be used once for a certain piece of research, it’s then locked away again afterwards.

    There’s also examples where people are paid directly/individually for allowing access to their data.

    Imagine the value to be leveraged by people if all data (civic, digital, health) was locked away from corporations. And not sold, temporarily leased to whoever individuals or communities choose to lease if to.

  • Basic Glitch@sh.itjust.worksOPtoTechnology@lemmy.world•2126: The year data will be controlled by citizens, not tech companiesEnglish
    3·
    7 days ago

    I’m head over heels in love with the idea of communities taking back control of their data and using it to leverage power.

    But I also think we should be thinking in terms of how do we achieve this before 2126 bc we need to establish and gain control before it can be used to train anymore shitty oligarchy controlled AI that keeps failing to perform in the real world.

    Even if this is just step one of a marathon, it seems like something most cities should be aiming to catch up with sooner rather than later:

    https://debeaumont.org/programs/made-for-health-justice/

    About MADE for Health Justice Modernized Anti-racist Data Ecosystems (MADE) for Health Justice partners with communities who are creating, using, and governing civic data on their own terms to advance health equity and more just decision making.

  • Basic Glitch@sh.itjust.workstoTechnology@lemmy.world•‘Slough is like an experiment’: Europe’s largest datacentre hub leaves town sweltering — Datacentres create a heat island effect, pushing up temperatures in the immediate vicinity by as much as 9CEnglish
    7·
    19 days ago

    The hallucinating, gaslighting, sycophantic chatbots that were hyped via propaganda campaigns that promoted them as the future and key to efficiency, are now destroying humanity and locking people in addictive cycles of delusion.

    “Ya better hop on board! Don’t wanna get left behind…”

    The hallucinating sycophantic chatbots are not only destroying the capacity for human relationships and interactions, they’re not even “efficient” and have destroyed most of the companies that have embraced them.

    The economy is absolute shit. “AI” companies aren’t even making any money but the chatbot addicts are still throwing endless piles of cash at them to burn while chasing the high that will never deliver (the cycle of desperate delusions common to any addiction), because the chatbots have them convinced (deluded) they’re always on the edge of the big breakthrough that will finally make it all worthwhile.

    And as the number of data centers increases, people are starting to take notice it sure does seem to be getting hot in this pot of boiling water… “Wonder what that’s all about? I’ll ask the company that owns the data center if it’s anything I should be concerned about?”

    “… Nope, turns out there’s a reassuring explanation for why this is all fine and nothing is as it seems… It just feels like this pot of water is getting hotter to you, but facts don’t care about your feelings. You can’t argue with facts…”

    “Just relax and come on in, the water’s fine!”

  • Basic Glitch@sh.itjust.workstoscience@lemmy.world•Conservatives are dying at higher rates than liberals. A new study points to mistrust in medicineEnglish
    72·
    23 days ago

    They fell for a scam. That doesn’t merit the death sentence.

    Agree. The sad fact is there have been plenty of mistakes made throughout history that can often serve as a kernel of truth to make a lie just believable enough. Given historical context within the U.S. (for example Tuskegee experiments), and the fact that even in the last decade we’ve uncovered more cases of unethical human experimentation by both the government and private companies (MK Ultra, social media manipulation of users emotions), we really should be asking why more isn’t being done by leaders to: 1. Publicly acknowledge some very big mistakes, 2. Create ongoing consequences for the people who did this unethical bullshit. As in, ongoing financial penalties/compensations for victims and their families/communities, and demanding more transparency from these agencies and businesses… Instead of allowing them to just continue operating as normal, essentially tax free with zero transparency while pretending we should all just say thank you.

    Idk is expecting the bare minimum from the people we trust (and PAY) to create and enforce laws and policy really too far fetched?

    I know whenever I read some crazy MAHA bullshit coming from DHHS in 2026 implying I should be depending on raw milk for my own health instead of vaccinations, I think about the fact that A. Obviously this is a once trusted source of information I can no longer trust, B. The damage currently being done to public trust isn’t going to disappear overnight if/when fascism leaves office, C. The current damage is compounded on top of a lot of previous damage our government never took the time to actually acknowledge and try to repair. D. I doubt anybody in this administration will face consequences for the damage they’re doing, but there will be ongoing consequences to public health and safety for decades if not generations. And that’s kind of their overarching goal.

    Tldr: It’s valid to be angry at people for making poor choices, but they’re still people. I’m more angry at the system that failed them and is continuing to fail all of us by not demanding accountability from the agencies/corporations/individuals who knew what they were doing was wrong, but did it anyway because they believed/trusted that even if they got caught, any consequences/penalities would be insignificant.

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