Ramblings from McNutcase

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See, that’s what the app is perfect for.

Sounds perfect Wahhhh, I don’t wanna
naamahdarling
socialistexan

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Uhhhhhhhh that seems bad

socialistexan

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HELLO

alatariel-galadriel

okay. Is this concerning? Abso-fucking-lately.

But in case it gives anyone a little more peace of mind, these disease registries are fairly common in the US. The largest is the Cancer Registry, which contains data from every cancer patient in the US. These registries are populated with data that was de-identified BEFORE it was put into the registry.

Any information that has the potential to link a person to their data, separately or combined, is completely detached and removed before it is handed over. De-identification is done by the analysts in a health system/the institute generating the medical records, not through the government (NIH/HHS) or even the researchers themselves. This is legally required via HIPAA.

I am not trying downplay people’s concerns here—both myself and my colleagues are SERIOUSLY concerned about HIPAA enforcement with how heavily the Office of Civil Rights was hit by federal funding cuts. My main concern right now is pressure on researchers to find correlatory or biased results and how the media reports on any of those findings, and as protections erode, this could go seriously south.

This has the potential to go downhill fast, but I want to emphasize that we are *not there yet*. “Yet” being the key word. If you’re looking for something actionable to do, reach out to your representatives and make a stink about your concerns about the enforcement of HIPAA following funding cuts to the Office of Civil Rights. Keep reaching out. Be loud. Be impossible to ignore. Make yourself heard.

naamahdarling

Yeah, it's the part where I don't trust them to make it anonymous that worries me first, right before how they are talking about using this sort of thing to monitor health in real time.

There is no way they won't take it from looking at groups of anonymous people to looking at individuals and using that information to harm people.

thebibliosphere
thebibliosphere

"Fear mongering, fear mongering, you're fear mongering!!"

What reality do you live in right now where you're not appropriately terrified? Fuck outta here.

metautske

would also argue that what you're doing isn't fear mongering, since you're giving alternatives and options and not just drumming up more anxiety and fear for the sake of it. feel like that's an important distinction

thebibliosphere

I'm also mainly provided basic food hygiene information. Like I'm sorry, but there is a reason even before I developed a food disability that I didn't let other people cook for me, and that's because they've either a) not been taught food safety or b) think it's pointless, and I'm not about to get a campylobacter infection again because some people think medium rare chicken is a thing.

thebibliosphere

So sorry to have inflicted the phrase ‘medium rare chicken’ on so many of you.

I assure you, whatever second hand horror you’re experiencing, it’s not as visceral as the horror I went through as a teenager when I bit into said ‘medium rare chicken’ that had been served to me by an adult, which then resulted in a month long campylobacter infection that required IV antibiotics to treat because my insides wouldn’t stop trying to become my outsides.

Buy a meat thermometer 👍

tw food tw illness even without the infection it's horrifying undercooked chicken feels Wrong to bite in a way that's hard to describe memories I wish I'd been spared
sigridstumb
turquoisedata

How very depressing that Neil Gaiman had trended not even a tiny bit for demonstrating what a fucking horrific person he is.

As a reminder, he's suing Caroline Wallner, one of his accusers, for breaking her NDA. Not for libel. He's saying she shouldn't have told anyone about it, not that she lied.

He doesn't need the money. He's risking the Streisand effect. He is punishing Caroline, he's trying to intimidate other victims who have signed NDAs to scare them into continued silence.

He is no friend to women, to the LGBTQIA+ community, to anyone quite frankly unless he thinks they are of value to him.

Share the story. Put it on Facebook and bluesky and whatever else you're on. Make it clear what a horrifying person he is. Tell your friends. He's paying Edendale a fortune to try and cover this up. Make this hard for him. Make it cost him money.

I'm regarding this as a confession from him tbh
seananmcguire
moniquill

One of the socialist things I’d like to see ALONG WITH UBI (not instead of) is a government option for all basic neccesities. I am aware that the government option would -suck- and as long as it’s survivably functional, I’m fine with that. When I was a kid, we got monthly commodity food boxes. They’d be filled with food that looked like this:


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And in lean months, it would be that and whatever we could get from the garden, or forage/fish, or trade with friends and neighbors. My mom had this awesome recipe for peanut butter balls that utilized the powdered milk, shit-quality peanut butter, and maple-flavored corn syrup that we routinely got in our box and actually made it good. 

I think that these things should be available for purchase at every supermarket, and that the prices should be fixed with relation to the minimum wage. All brands should have to compete with the government option - if SPAM is going to be more expensive than LUNCHEON MEAT in the silver can, then it needs to justify that cost by being better quality.

I want the same thing for housing. I want fucking Commie Blocks to be an option.

This would combat runaway inflation by putting a price cap on survival needs. It would guard against shrinkflation, because a consumers could compare the Government Standard portion to the brands. UBI ought to be such that it covers The Government Option for food, housing, clothing, transit etc. with generous wiggle room for emergency savings and little joys in life. 

Everyone should get their own UBI account in their own name at birth, along with their social security number. It should follow the individual regardless of guardianship. Parents/guardians should have incrementally less and less control over said funds as the child gets older, and should have to provide itemized receipts of how money taken from a child’s account is spent (Similar to what you have to do if you’re in control of an elder’s social security money).

https://www.ssa.gov/ssi/text-repayee-ussi.htm

'Each year, we will ask certain representative payees to complete a Representative Payee Accounting Report showing how they spent and saved the money they received for you during the 12-month report period.'

These are steps that would could easily institute tomorrow be reallocating funding, and they’d have a huge impact on cost of living for everyone.  

This rant brought to you by the fact that store brand canned luncheon meat in my local grocery held fast at a dollar for the better part of two decades but now costs $2.18.

an-aura-about-you

Oh man I wonder how many food monopolies this would expose? After all, a lot of store brand food comes from name brand companies. If there's going to be a baseline government option and they can no longer mark up based on name alone, what sense would there be to hide their brand name behind the generic?

alexseanchai

as long as there's enough variety in the government options so that disabled people (food allergies, wheelchair users, whatever) also get enough bang for their UBI buck to have as much wiggle room for emergency savings and little joys in life after covering all the essentials

same with people who keep kosher or other religious food restrictions that require attention at the manufacturing end