The National Institutes of Health will use information from federal health insurance programs Medicare and Medicaid to create a „real-world data platform“ to determine the cause of autism, the agency announced this week.
The Department of Health and Human Services said in a statement on Wednesday that the NIH would team up with the Centers for Medicare & Medicaid Services (CMS) to create the database utilizing insurance claims, electronic medical records and data from wearable devices with health sensors, like smartwatches.
„We’re using this partnership to uncover the root causes of autism and other chronic diseases,“ HHS Secretary Robert F. Kennedy Jr. said in a statement.
HHS said that CMS and NIH would establish a data use agreement focused on Medicare and Medicaid enrollees — about 36% of Americans — and follow autism diagnoses before expanding their research into additional chronic health conditions.
„Using ASD [Autistic Spectrum Disorders] as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,“ the statement read.
There was outrage last month after NIH Director Jay Bhattacharya told his staff of plans to compile a database of Americans with autism using private data that could be used to create a national autism registry.
Unnamed HHS sources told multiple news outlets that the agencies are not creating an autism registry and described the effort instead as a real-world data platform linking existing datasets. NPR has not independently confirmed the reporting.
In Wednesday’s statement, NIH’s Bhattacharya said that the partnership with CMS was „an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives.“
„Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease — ultimately delivering superior health outcomes to the Americans we serve,“ he said.
NPR has reached out to HHS, NIH and CMS, but none responded to requests for comment before publication of this story.
The latest details immediately raised more alarm bells for the autistic community and privacy experts, who questioned how this data would be used and how patients‘ sensitive data would be protected.
Helen Tager-Flusberg is the director of the Center for Autism Research at Boston University and leader of the Coalition of Autism Scientists, an organization formed in response to Kennedy’s widely debunked views on autism.
She warned of the potential for information collected in this database to be abused.
„CMS data includes certain information about individuals — age/date of birth, sex, where they live. It is possible to identify a person based on knowledge about these characteristics,“ Tager-Flusberg said in an email to NPR.
„While the NIH Director provides assurances that privacy protections will be put in place, we have seen other examples of how this administration has given permission to identify people to certain people working for the federal government. How will this registry be protected?“ she asked.
The heightened public focus on autism comes as Kennedy has repeatedly vowed to identify the cause of the disorder and ultimately eradicate it.
To that end, Kennedy, a former environmental lawyer, has made a number of baseless, conspiratorial claims about autism, including that it can be traced back to childhood vaccinations and that an „environmental toxin“ is to blame for the uptick in autism diagnoses over the years.
He described autism as „a preventable disease“ and said his agency would find the root cause of the disorder by September.
The notion that vaccines cause autism has been thoroughly debunked in medical science, and experts say there is likely no single cause for autism. Bhattacharya, the NIH director, pushed back on the September deadline to find a cause and said that a year timeline was more realistic.
And while a Centers for Disease Control and Prevention report did find that autism prevalence in the United States had increased from 1 in 36 children five years ago, to 1 in 31 children in 2022, it is more likely that this is due in large part to more comprehensive screening across a broader population.
Tyrannical-Botanical on
Governments making lists of people they consider to be undesirable or subhuman always works out so well for all involved.
Agreeable_Crow789 on
So where do we think the first camp is gonna be?
Funkymonkeyhead on
Doesn’t RFJ Jr. have something going on as well? He’s not quite…..right.
vriska1 on
Can this be taken to court?
SicilyMalta on
Was this Trump’s May 6 promise of a „very very big announcement.“? Greatest news ever …blah blah blah
He’s always hyping up shit, delaying it, and often it’s nothing.
windwatcher01 on
They think they’ll be able to load all this data into a magic AI wand that they’ll wave and be able to (falsely) shout „Vaccines!‘
johnn48 on
I wonder what kind of Autism badges he will have them wear. I know the Yellow star and Pink triangle have been used before. Didn’t he say they “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date“. Maybe a baseball with a Red slash or some other symbol of a poem, date, or job with the Red slash. I wonder🤷🏻
Deep_Alps7150 on
RFK isn’t going to like when he gets told by his AI it’s always been around at similar levels to today and is just very under diagnosed in women/older populations.
nasalevelstuff on
Alarm bells are ringing for anyone who paid attention in history class
PlaguePA on
Love the „Party of Small Government“
blazze_eternal on
And when he finds out many people with Autism aren’t on Medicaid/Medicare?…
Mundane_Quality8858 on
Is this like the lists that nazi germany made?
Bubbly_Base_1011 on
As someone on the spectrum, this shit worries me.
What exactly does this roadkill-eating idiot plan on doing with all of this information?
This worthless dumbass also seems to think we have „aborted fetus parts“ in vaccines. Fuck him.
Space_Sweetness on
How about a brainworm database?
oddlyluminous on
Most public schools have parents mark a box that say you approve the use of medicaid to pay for things like speech therapy or occupational therapy. Does this mean if your child is on the spectrum and has an IEP it’s too late and they’ll be on a list? This is horrifying.
Glad-Attempt5138 on
Don’t forget to put a yellow star on there clothing since you insist on having a data base. You realize RFK Jr. someone else tried this on the 30’s with another group of people. We all know how that turned out. It’s time for you to drop all this BS.
Potential_Goal6202 on
Terrifying
NeuralNetAIBot on
It’s a terrible idea because the Government is increasingly fabricating evidence to declare people as being mentally incompetent. For many this has a lot of negative side effects, and it could lead to a point that you find yourself without any basic rights at all, just because you wound up in an autism database at some point. The way the Gov’t uses the DSM, and the way the medical system can be turned against a patient, is something that people need to keep in mind with anything like an Autism registry.
boofles1 on
Let me guess, he’s going to cross match vaccinations with ASD and say vaccines cause autism.
wftango on
Can we create a database for generationally wealthy morons who *choose* to eat roadkill for some fucking reason and end up with brain worms? And then…not confirm them as HHS? Jesus Fucking Christ.
thatirishguyyyyy on
They are really pushing for these camps.
And the right will joke that these *concentration camps* are literal camps to make people concentrate harder and that the left is just dealing in semantics.
Fuck this timeline.
onedumninja on
This is the kennedy that lived to old age…
God isn’t real 🙁
apoca1ypse12 on
God, this guy is a fucking idiot.
braille_porn on
Why is this dude so obsessed with autism
Red_Wing-GrimThug on
Whats next? They’ll look into people who said they’ve had anxiety and other things that get stuck on your medical record.
brighterthebetter on
Fuck this is terrifying. I hate that place
Open_Mortgage_4645 on
Everything about this, and about him is despicable.
No-Cup-8096 on
RFK JR. hasn’t heard of HIPAA, idiot.
6Arrows7416 on
Genuinely, fuck everyone in government and medicine that’s taking orders from this crusty ass washed up hippie.
neeesus on
“It will unlock landmark research…”
Yet MAGA is cutting science and research budgets left and right.
Fuck out of here
CupcakesAreTasty on
He’s absolute trash.
Troubled202 on
Great idea. What could go wrong…
Ello_Owu on
Literally fucking everything in the US is going to be on that autism list.
friendsafariguy11 on
Next comes the tattoo barcodes and the patches on the clothes.
mankowonameru on
Have they decided yet what stylish patch I have to wear?
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The National Institutes of Health will use information from federal health insurance programs Medicare and Medicaid to create a „real-world data platform“ to determine the cause of autism, the agency announced this week.
The Department of Health and Human Services said in a statement on Wednesday that the NIH would team up with the Centers for Medicare & Medicaid Services (CMS) to create the database utilizing insurance claims, electronic medical records and data from wearable devices with health sensors, like smartwatches.
„We’re using this partnership to uncover the root causes of autism and other chronic diseases,“ HHS Secretary Robert F. Kennedy Jr. said in a statement.
HHS said that CMS and NIH would establish a data use agreement focused on Medicare and Medicaid enrollees — about 36% of Americans — and follow autism diagnoses before expanding their research into additional chronic health conditions.
„Using ASD [Autistic Spectrum Disorders] as the pilot research program, teams at CMS and NIH will establish a secure tech-enabled mechanism to enhance this data sharing with timely, privacy and security compliant data exchange,“ the statement read.
There was outrage last month after NIH Director Jay Bhattacharya told his staff of plans to compile a database of Americans with autism using private data that could be used to create a national autism registry.
Unnamed HHS sources told multiple news outlets that the agencies are not creating an autism registry and described the effort instead as a real-world data platform linking existing datasets. NPR has not independently confirmed the reporting.
In Wednesday’s statement, NIH’s Bhattacharya said that the partnership with CMS was „an important step in our commitment to unlocking the power of real-world data to inform public health decisions and improve lives.“
„Linking CMS claims data with a secure real-world NIH data platform, fully compliant with privacy and security laws, will unlock landmark research into the complex factors that drive autism and chronic disease — ultimately delivering superior health outcomes to the Americans we serve,“ he said.
NPR has reached out to HHS, NIH and CMS, but none responded to requests for comment before publication of this story.
The latest details immediately raised more alarm bells for the autistic community and privacy experts, who questioned how this data would be used and how patients‘ sensitive data would be protected.
Helen Tager-Flusberg is the director of the Center for Autism Research at Boston University and leader of the Coalition of Autism Scientists, an organization formed in response to Kennedy’s widely debunked views on autism.
She warned of the potential for information collected in this database to be abused.
„CMS data includes certain information about individuals — age/date of birth, sex, where they live. It is possible to identify a person based on knowledge about these characteristics,“ Tager-Flusberg said in an email to NPR.
„While the NIH Director provides assurances that privacy protections will be put in place, we have seen other examples of how this administration has given permission to identify people to certain people working for the federal government. How will this registry be protected?“ she asked.
The heightened public focus on autism comes as Kennedy has repeatedly vowed to identify the cause of the disorder and ultimately eradicate it.
To that end, Kennedy, a former environmental lawyer, has made a number of baseless, conspiratorial claims about autism, including that it can be traced back to childhood vaccinations and that an „environmental toxin“ is to blame for the uptick in autism diagnoses over the years.
He described autism as „a preventable disease“ and said his agency would find the root cause of the disorder by September.
The notion that vaccines cause autism has been thoroughly debunked in medical science, and experts say there is likely no single cause for autism. Bhattacharya, the NIH director, pushed back on the September deadline to find a cause and said that a year timeline was more realistic.
And while a Centers for Disease Control and Prevention report did find that autism prevalence in the United States had increased from 1 in 36 children five years ago, to 1 in 31 children in 2022, it is more likely that this is due in large part to more comprehensive screening across a broader population.
Governments making lists of people they consider to be undesirable or subhuman always works out so well for all involved.
So where do we think the first camp is gonna be?
Doesn’t RFJ Jr. have something going on as well? He’s not quite…..right.
Can this be taken to court?
Was this Trump’s May 6 promise of a „very very big announcement.“? Greatest news ever …blah blah blah
He’s always hyping up shit, delaying it, and often it’s nothing.
They think they’ll be able to load all this data into a magic AI wand that they’ll wave and be able to (falsely) shout „Vaccines!‘
I wonder what kind of Autism badges he will have them wear. I know the Yellow star and Pink triangle have been used before. Didn’t he say they “will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date“. Maybe a baseball with a Red slash or some other symbol of a poem, date, or job with the Red slash. I wonder🤷🏻
RFK isn’t going to like when he gets told by his AI it’s always been around at similar levels to today and is just very under diagnosed in women/older populations.
Alarm bells are ringing for anyone who paid attention in history class
Love the „Party of Small Government“
And when he finds out many people with Autism aren’t on Medicaid/Medicare?…
Is this like the lists that nazi germany made?
As someone on the spectrum, this shit worries me.
What exactly does this roadkill-eating idiot plan on doing with all of this information?
This worthless dumbass also seems to think we have „aborted fetus parts“ in vaccines. Fuck him.
How about a brainworm database?
Most public schools have parents mark a box that say you approve the use of medicaid to pay for things like speech therapy or occupational therapy. Does this mean if your child is on the spectrum and has an IEP it’s too late and they’ll be on a list? This is horrifying.
Don’t forget to put a yellow star on there clothing since you insist on having a data base. You realize RFK Jr. someone else tried this on the 30’s with another group of people. We all know how that turned out. It’s time for you to drop all this BS.
Terrifying
It’s a terrible idea because the Government is increasingly fabricating evidence to declare people as being mentally incompetent. For many this has a lot of negative side effects, and it could lead to a point that you find yourself without any basic rights at all, just because you wound up in an autism database at some point. The way the Gov’t uses the DSM, and the way the medical system can be turned against a patient, is something that people need to keep in mind with anything like an Autism registry.
Let me guess, he’s going to cross match vaccinations with ASD and say vaccines cause autism.
Can we create a database for generationally wealthy morons who *choose* to eat roadkill for some fucking reason and end up with brain worms? And then…not confirm them as HHS? Jesus Fucking Christ.
They are really pushing for these camps.
And the right will joke that these *concentration camps* are literal camps to make people concentrate harder and that the left is just dealing in semantics.
Fuck this timeline.
This is the kennedy that lived to old age…
God isn’t real 🙁
God, this guy is a fucking idiot.
Why is this dude so obsessed with autism
Whats next? They’ll look into people who said they’ve had anxiety and other things that get stuck on your medical record.
Fuck this is terrifying. I hate that place
Everything about this, and about him is despicable.
RFK JR. hasn’t heard of HIPAA, idiot.
Genuinely, fuck everyone in government and medicine that’s taking orders from this crusty ass washed up hippie.
“It will unlock landmark research…”
Yet MAGA is cutting science and research budgets left and right.
Fuck out of here
He’s absolute trash.
Great idea. What could go wrong…
Literally fucking everything in the US is going to be on that autism list.
Next comes the tattoo barcodes and the patches on the clothes.
Have they decided yet what stylish patch I have to wear?