... "most of them" from the Muskian-Thielian point of view, not ours of course.

They act like they’ve never heard of our constitution

I'm being facetious. Sort of.

My best friends daughter has a very rare form of Down syndrome, like less than 1000 people in the US
I think it’s called a rainbow version or some such

Very little about it is known, so many the families have formed a group, mostly to raise money and share information for their Drs or for research. Is that a bad thing?

If they are doing legit research, and the CBS story indicates it’s an NIH study, then I reckon folks that have or live with autism might be ok with it

If it is just to prove the vaccine cause bullcrap, then no

In my profession we use a long range comprehensive research study on a very common condition which I’d bet affects DUers or someone they know. The subjects gave up all sorts of medical information and were studied over decades. It was a ground breaking study which led to better diagnosis and treatment

Edit to add; the NIH website lists nearly 80 different registries I looked it up

He fired all the scientists who oversee research into autism and other conditions and ensure that patients' rights and privacy are protected.

Now he wants to put together a list of people with autism, with no scientific oversight or assurance of patients' rights.

Not just no. Hell no.

With 10,000 participants.

The information is all up from previous NIH studies

There's a new group of people in charge. And their motivations will not necessarily be the same as their predecessors. Think about what a group who denies science and suppresses inconvenient information will do.

ETA: Also, my work is adjacent to a lot of intellectual disabilities programs which cost billions upon billions of dollars every year. It's likely the most expensive part of the healthcare and education budget in each state. I think part of why they're rounding up names is so they can identify whose services they want to cut.

Bio
Jay Bhattacharya is a Professor of Medicine at Stanford University. He is a research associate at the National Bureau of Economics Research, a senior fellow at the Stanford Institute for Economic Policy Research, and at the Stanford Freeman Spogli Institute. He holds courtesy appointments as Professor in Economics and in Health Research and Policy. He directs the Stanford Center on the Demography of Health and Aging. Dr. Bhattacharya’s research focuses on the economics of health care around the world with a particular emphasis on the health and well-being of vulnerable populations. Dr. Bhattacharya’s peer-reviewed research has been published in economics, statistics, legal, medical, public health, and health policy journals. He holds an MD and PhD in economics from Stanford University.

https://profiles.stanford.edu/jay-bhattacharya

He promoted the foolish idea of "herd immunity." He opposed the COVID vaccine, which saves lives.

Will he restores some order to the agency? I hope so.

RFK, Jr., Musk, and Trump have done irreparable damage to biomedical research.

They are disgusting, evil, vile people.

https://www.science.org/content/article/new-nih-director-defends-grant-cuts-part-shift-support-maha-vision

They simply can not be trusted with that information.

It’s not MAGA, it’s NIH. There are currently 8 pages of study results on Autism studies and results listed on the NIH website. Including a registry with 10,000 participants!

Data is data

And you and I have no business telling my friends what they should do with their special needs daughter. Good Lord.

The lackeys left all the previous studies up on the NIH website

Including one that says vaccines don’t cause autism and failure to vaccinate increases the risks of measles.

They clearly suck at gutting

Eternal vigilance is required when fascist regimes are involved.

You should start a nationwide advocacy thing for special needs kids and families.
They need to be warned that the government is going to disappear their kids

Good luck with it

If you believe this administration is worthy of the public trust there is nothing I can do to disabuse you of that notion. You can start a poll- "Do you believe the Trump administration has earned the public trust?"

Their kid. They plan to just take data about minor patients from…? I dunno.

It's a common (1 in 30) pattern of neurological differences, not a disease. There is tons of research already establishing that it is genetic. Literally everyone else in my family is also autistic. It doesn't need to be "cured" because it is a different way of experiencing and processing the world which is equally as valid as any other.

If people want to volunteer themselves or their underage kids to participate in a study with a defined purpose such as to look at options to improve quality of life for autistic people, then fine.

But that's light years away from requiring all neurodivergent people (which btw includes ADHD, dyslexia, Tourettes, complex PTSD, etc.) to register their identity with the government. Fuck that.

Autism is an identity, not a disease. How would you feel about a national registry of LGBTQ+ people? Or a national registry of black people? Or a national registry of recovering alcoholics and drug addicts? I'm sure they could drum up some tenuous medical excuse for that as well but it would be equally repugnant. Why not a national registry of people who have been diagnosed with clinical depression so we can reduce suicides by limiting their access to firearms?

And even if it was a disease, who on earth would agree to this government making a list of everyone with diabetes or cancer and then keeping it in a probably insecure location where it will inevitably be leaked to insurance companies and prospective employers?

Name one other class of US citizen (other than sex offenders) that is legally required to register themselves on a centralised database.

FUCK THOSE FASCISTS

Absolutely not.

Recommended.

Have they done anything to demonstrate they can be trusted with that information?

I find this extremely unsettling. I am unaware of any potential advantages to it, and can see terrible possibilities. A person's medical records are between them and their medical providers. Bad enough insurance companies are involved.

I want them to stay out of my life, like they should.

Last edited Wed Apr 23, 2025, 12:29 AM - Edit history (1)

This is the Nazi playbook, in all these EOs or policies they are pushing out of the Whitehouse.

This began in 2007 when he was the chairman of the World Mercury Project which became Children’s Heath Defence around 2013. He then became director of CHD for 8 yrs. CHD is made up of moms of autistic kids - millions of moms are subscribers. If you go on X, you will see he has a huge following of moms of autistic kids. The moms want answers. Some are called the MAHA Moms. - Make America Healthy Again

How is looking for answers discrimination?

I despise him more than I despise Trump.

RFK, Jr. is a fool, a sex offender, and a disgusting human being. He knows that the NIH has funded millions of dollars of research into autism. The potential links to vaccines have been studied thoroughly and no link exists. And now he's in charge and he's cut all the funding for legitimate work and replaced it with junk science.

RFK, Jr. is single-handedly responsible for the deaths of millions of children in Africa, because of his decades" long evil work. And now he's bringing it to us.

He's a truly evil person.

I havr some lovely swamp land to sell you. There are MANY researchers looking for answers. Kennedy and the anti-science crowd aren’t interested in actual answers. They want to justify their beliefs and to ban vaccines. Kennedy and his ilk prey on the hopes and fears of parents who want something to blame.

https://www.bbc.com/future/article/20250415-the-genetic-mystery-of-why-some-people-develop-autism

Requiring people with a specific condition to sign up for a national registry is an appalling abuse of power, particularly where that same government has shown itself to be completely incompetent at protecting sensitive information.

Whether or not I choose to disclose my autism to my employer is my business. I personally have but many people do not because of the stigma still attached to it. However, once that data (which the government has no actual use for) has been breached and it all goes up on the web somewhere any prospective employer would likely be able to find it and use it as an excuse not to hire me. That's how it is discriminatory.

How would you feel if everyone with diabetes, HIV, or cancer was required to register on a government database for some vaguely defined "research purpose" and then that data was leaked to insurance companies and potential employers?

I wish there was a more emphatic choice.

Hell no!