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U.S. autism data project sparks uproar over ethics, privacy and intent

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21–30 of 377 posts

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#21
Ultimately, whether one thinks that having more volume of and more or less fragmented statistics is good or bad depends on their opinion of the State.

Olivier Ray wrote a great book about the history of statistics : Quand le monde s’est fait nombre (fr)

https://archive.org/details/OlivierReynombre/

https://www.radiofrance.fr/franceculture/podcasts/les-chemin....

https://www.fnac.com/a9931250/Olivier-Rey-Quand-le-monde-s-e...

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#22
post #15

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

I agree generally but I hope we make as much real anonymous health data available for research.

Google is certified and runs the biggest medical database with (I believe without googling this) the biggest hospital operator in the USA.

I have a condition which is rare enough that it doesn't get enough funding and data is missing

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#23
post #15

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

It was notable that he started with "these people will never pay taxes" when announcing this.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#24
post #15

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

I agree generally but I hope we make as much real anonymous health data available for research. Google is certified and runs the biggest medical database with (I believe without googling this) the biggest hospital operator in the USA. I have a condition which is rare enough that it doesn't get enough funding and data is missing

> Google is certified

That doesn't matter _at all_ when the government comes knocking at Google's door - in the best case, they have a subpoena that can at least be appealed afterwards, in the worst case it's DOGE teens backed by a bunch of heavily armed guys in camouflage.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#25
post #15

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

I agree generally but I hope we make as much real anonymous health data available for research. Google is certified and runs the biggest medical database with (I believe without googling this) the biggest hospital operator in the USA. I have a condition which is rare enough that it doesn't get enough funding and data is missing

I would leave that in the hands of professionals though.

Which is evidentially not this lot. Not even remotely.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#26
post #6
post #4

This is just another angle of placing people in camps. Combine this with the overzealous focus on transvestites and the so called "illegal aliens" you should see a pattern with where the Nazis began.

Even if you are a current supporter of this administration this all should give you a moment of pause really. Even if you think the current administration isn’t about this, and it’s fear mongering by the media to you, what if the next administration goes a step further than you like, and this is where the door was set open? There is a reason the constitution was set up the way it was in the light of not having a King…

No he is saying putting people in camps like murder camps / forced labor camps / concentration camps.

Not in camps like divided by opinion.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#27

The criteria for diagnosing ASD today are vastly different from those that would’ve resulted in an autism diagnosis shortly after the abolishment of lobotomy, it is hardly surprising the rate keeps going up as you widen the net.

> The criteria for diagnosing ASD today are vastly different

Not that much.

The difference between now and 50 years ago is that a) we don't just throw them into asylums, b) we actually have accessibility of getting diagnosed, c) employment opportunities suitable for many people with mental disabilities (such as factory line assembly) have gone down the drain.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#28
post #4

This is just another angle of placing people in camps. Combine this with the overzealous focus on transvestites and the so called "illegal aliens" you should see a pattern with where the Nazis began.

Nit, nobody actually cares all that much about transvestites. Vest like from vestments meaning clothes. They're cross-dressers. Historically transsexual or transgender (depends on the country which one is the more prominent term) people have been called transvestites but it was a mischaracterization. Someone born with XX chromosomes but who lives his life full-time as a man is very different from a woman who likes to dress up like a man for sexual or other pleasure.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#29
post #4

This is just another angle of placing people in camps. Combine this with the overzealous focus on transvestites and the so called "illegal aliens" you should see a pattern with where the Nazis began.

> transvestites The focus seems to lie on transgender people, not cross dressers.

I don't think there's much discern, given the outrage around the Drag Queen Story Hour.

Re: U.S. autism data project sparks uproar over ethics, privacy and intent

#30

Earlier quoted context omitted.

I agree generally but I hope we make as much real anonymous health data available for research. Google is certified and runs the biggest medical database with (I believe without googling this) the biggest hospital operator in the USA. I have a condition which is rare enough that it doesn't get enough funding and data is missing

> Google is certified That doesn't matter _at all_ when the government comes knocking at Google's door - in the best case, they have a subpoena that can at least be appealed afterwards, in the worst case it's DOGE teens backed by a bunch of heavily armed guys in camouflage.

Indeed. No data is safe or secure in such environments.

This has become an issue big enough that the US company I work for is actually removing data from US cloud providers to make it harder to get at. The European divisions have started data sovereignty projects because it's now a principal risk.

I'm out of the cloud as well.

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