RFK v. Privacy

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

Emily Largent at MEDPAGETODAY:

Most recently, HHS announced the creation of "a real-world data platform" combining data  insurance claims, electronic medical records, and consumer wearables, and enabling research into the "root causes" of autism.

It is not just autistic people who should be worried by these developments.

If you have autistic patients or an autistic person in your family, you should worry. Research can harm people not directly involved in it and should be conducted with attention to minimizing such harms. For example, autism is thought to be caused by a combination of genetic and environmental factors. Given the strong role of genes, research into the root causes of autism -- or into related conditions like attention deficit-hyperactivity disorder (ADHD), depression, or learning disabilities -- could generate important insights while also revealing sensitive or stigmatizing information about research subjects' family members and other social groups. This concern is acute, as Kennedy's hurtful comments have already perpetuated stigma. Those affected by research should have a voice in what the research looks like.

If you are among the three-quarters of U.S. adults who report having one or more chronic conditions, you should worry. Autism is the first but not the last condition that will be studied using the real-world data platform. Longer term, HHS plans to study other chronic diseases. Autistic people  that it is not clear whether this research will be conducted with individuals' consent, and they have raised important concerns about data privacy.


Research into chronic conditions is needed, but for it to be ethical, questions of consent and privacy -- flagged by the autistic community but relevant to all research participants -- must be resolved. The obligation to protect participants always exists but the stakes are heightened given this administration's willingness to trample privacy norms, placing people at risk of identification and harm if their information is mishandled.

Pritzker and the Privacy of Autistic People

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

A May 7 release from Illinois Governor JB Pritzker:

Today, Governor JB Pritzker signed Executive Order 2025-02, affirming Illinois’ commitment to the civil rights, human rights, and data privacy of autistic residents. The order protects individuals from unauthorized data collection and sharing by state agencies and ensures that autism-related information is handled only when necessary and with informed consent. The order comes in response to rising national concerns about efforts to create federal autism registries or databases without clear legal safeguards or accountability.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” said Governor JB Pritzker. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”

“We are rejecting stigma and standing with families, educators, and self-advocates across Illinois,” said Lieutenant Governor Juliana Stratton. “This order reinforces our belief that neurodiversity is a strength and that civil rights must evolve to meet emerging challenges in data and privacy.”

In February, Trump’s Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. incorrectly referred to autism as an “epidemic,” a stigmatizing narrative condemned by leading health experts and advocacy groups across the United States. Secretary Kennedy has threatened to create an autism database though the HHS, sparking outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.

Under this Executive Order, state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance, or program eligibility—and must always follow strict privacy and data minimization rules. Contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable.

Illinois now becomes one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity.

“This is a strong, timely safeguard. As new threats emerge to the rights of people with disabilities, Illinois is showing what leadership looks like—proactive, principled, and inclusive,” said Representative Natalie Manley (D-Joliet).

“This is a win for privacy, inclusion, and progress,” said Stephanie Brown, Executive Director of the Southern Illinois Autism Society. “We’re grateful the Governor is listening to the autism community and taking concrete action.”

“Too often, policies affecting the disability community are made without us" said Karen Tamley, President and CEO of Access Living, a service and advocacy center run and led by disabled people in Chicago. "We must work to remove societal barriers and protect disability rights. Today, Illinois is taking an important step to protect the privacy of autistic people in our state."

“As the lead agency for The Autism Program of Illinois, a statewide network built by Hope to serve thousands of children and families, we’ve long upheld the principle that private health information must never be shared without informed consent,” said Clint Paul, CEO of Hope. “For more than six decades, Hope has championed the rights of individuals with autism—through care, education, and advocacy. We commend Governor Pritzker’s executive order for aligning with our values: protecting privacy, rejecting stigma, and affirming that every person deserves to be treated with dignity and respect.”

"At a time when certain federal officials are sharing dangerous misinformation about autistic people, and when members of our community are understandably concerned about whether the federal government has our best interests are heart, it is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,” said Colin Killick, Executive Director of Autistic Self Advocacy Network.

“We are thankful to Governor Pritzker and his cabinet for taking this strong stand and action to protect our rights to consent and be heard about decisions that threaten the progress made by advocates, family members, educators, legislators, and other champions serving the disability community,” said Kimberly L. Johnson, Chicagoland Autism Connection. “People living with autism and their family members are not just numbers in a research project! ​ Nothing about us, without us!

"As a mother of a ten-year-old on the spectrum and Executive Director of The Arc of Illinois, I’m grateful for this bold step to protect the rights and dignity of autistic individuals,” said Samantha M Alloway, Executive Director at The Arc of Illinois. “At a time when fear and misinformation threaten hard-won progress, Illinois is choosing inclusion, consent, and civil rights. Our voices are being heard.”

“My son is deserving of the same rights to medical and personal privacy as anyone else in this country, even more so in today’s climate. This order is a huge relief for families like mine,” said Mike Baker, a Schaumburg advocate and father of a teenager with autism. “We want our children to have equal rights—not be treated like data points or monitored without cause. His privacy is worth our protection.”

This executive order builds on a rich history of disability rights advocacy in Illinois. Just last year, Governor JB Pritzker signed the bipartisan Dignity in Pay Act, which will eliminate subminimum wage and expand employment opportunities for people with disabilities across Illinois. Additional efforts from the Pritzker administration to protect Illinoisans with disabilities include banning discrimination in housing selection based on non-employment income such as disability payments, and expanding accommodations for people with disabilities seeking to attend legislative meetings, hearings, and other government events at the Illinois Capitol Complex. Funding for disability services and supports have also reached record levels during Governor Pritzker’s time in office.

A Non-Registry Registry

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.  Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.

Melody Schreider at The Guardian:

While the US Department of Health and Human Services (HHS) denies it’s a registry, the agency did confirm a sweeping database of autistic people will power a $50m study on autism. The health secretary, Robert F Kennedy Jr, said last week that he plans to announce results from the study within months.

A petition against the registry gained thousands of signatures in a single day, jumping from 2,500 to nearly 35,000 signatures within 24 hours.

“I’m a quiet person who likes to just be in the background,” said first-time petition creator Ryan Smith, a parent of two neurodiverse children living in Idaho. He also didn’t want to make himself a target.

“But I feel really, really, really strongly about this, and I have to speak up for my kids who can’t speak for themselves.”

The petition gathered nearly 50,000 names before declaring victory when HHS seemed to walk back on the plan.

“We are not creating an autism registry,” an HHS spokesperson said.

But the difference seems to be in the name. The agency is creating a “real-world data platform” to “link existing datasets” for the research into causes of and treatments for autism, the spokesperson confirmed.

“They’re saying it’s not an autism registry, but it sounds like they kind of just changed the name of it,” said Amy Marschall, an autistic psychologist who has long objected to mandatory autism registries.

...

“And at worst, I worry that we’re on a slippery slope to eugenics,” Smith said. “My mind immediately goes to history and things that happened in Nazi Germany. That’s extreme, but it feels like a possibility.” Disabled people were the first to be targeted then, he pointed out.

Opponents also wonder about privacy and security measures, which have not been detailed by health agencies, and how individuals’ information could be used against them.

“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” Marschall asked.

Explaining the Backlash Against a Registry

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.

 Ariana Eunjung Cha, Caitlin Gilbert and Fenit Nirappil at WP:

The Trump administration has retreated from a controversial plan for a national registry of people with autism just days after announcing it as part of a new health initiative that would link personal medical records to information from pharmacies and smartwatches.

...

Scientists, privacy experts and advocates for people with autism acknowledged the potential of the data efforts to advance research — with or without a registry. But, they added, the initiative hinges on a single, critical factor that is declining in some communities: trust in the Trump administration.

...

David Mandell, a professor of psychiatry at the University of Pennsylvania School of Medicine who focuses on autism, noted that the U.S. DOGE Service sought sensitive government information on individuals, including data from the IRS and Medicare program, as part of a crackdown on undocumented immigrants.

“We have really strong health data protections in our society for a really good reason,” Mandell said, “and this administration has given us no confidence that they will treat our data in the protected way that it should be treated.”

Even with privacy protections, the data would be problematic.

One of the biggest challenges is the fragmented U.S. health-care system. Unlike countries such as Denmark and Israel — which have national health systems and centralized databases used for pioneering autism research — medical data in the United States is scattered across separate systems run by hospitals, insurers, pharmacies and even individual doctors.

Merging data gathered for different purposes and maintained by different groups sometimes involves a lot of guesswork (such as matching up a billing address with the location where a smartwatch is registered). That is highly likely to yield duplicate entries, wrongly matched records and other errors that are difficult to account for.

That makes it difficult to trust findings, said researchers such as Catherine Lord, a psychologist at the David Geffen School of Medicine at UCLA.

 

Mixed Message on Autism Registry

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing.

Jakai Spikes at WTVC-TV Chattanooga:

In a Monday council meeting, the head of the National Institute of Health said they are creating a new National Disease Registry for Autism.

But when we reached out to the Department of Health and Human Services Thursday to ask if patients can opt out, they told us they have no plans to create 'an autism registry.'

"We are not creating an autism registry. The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies."

 That's despite National Institute of Health Director Dr. Jay Bhattacharya saying this in a NIH council meeting Monday...

"The platform will accelerate research and create new opportunities for cross agency use of data in real time, health monitoring, developing national Disease registries, including one a new one for autism."

RFK Is Gathering Private Data on Autistic People

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

In light of the Trump administration's threats to privacy, this story is most disturbing:

Alexander Tin at CBS:

The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.'s new effort to study autism, the NIH's top official said Monday.

The new data will allow external researchers picked for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.

"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain," he said in a presentation to the agency's advisers.

Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.

The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said.

Help me understand how these lunatics who spent years fighting me on gun safety & used the idea of a government registry to create fear, now believe in a government registry to track people with autism. Everything they say is a lie, & everything they do is designed to hurt… https://t.co/G2seepJj15

— Fred Guttenberg (@fred_guttenberg) April 22, 2025

Florida Registries

In The Politics of Autism, I write:

[M]any police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.  Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”

In Orlando, James Tutten, WFTV.com

A new Florida law aimed at improving relations between law enforcement and people with special needs or mental illness will go into effect on Jan. 1.

The law is called the “Special Persons Registry” or the “Protect Our Loved Ones Act” and applies to people with developmental or psychological disabilities.

It authorizes local law enforcement agencies to develop a database of people who may have conditions like autism spectrum disorder, Alzheimer’s disease, dementia disorder, or Down syndrome.

“The officers will know what they’re going into,” Edith Gendron, the Chief of Operations at the Alzheimer’s and Dementia Resource Center said. “They won’t be left to guess why this person might seem to be hallucinating.”

A summary analysis by the Florida House:

CS/HB 1275 passed the House on April 20, 2023, and subsequently passed the Senate on May 1, 2023.

Some behaviors associated with certain developmental, neurological, or psychological impairments can increase a person’s chances of negative interactions with law enforcement. These include the inability to follow instructions, acting out, inappropriate verbal statements, or other actions that may be mistakenly perceived as an indication of hostility, criminal intent, or alcohol or drug intoxication.

Some local law enforcement agencies have developed programs to create safer interactions between law enforcement and individuals with certain impairments or disabilities. These include registries that allow individuals with certain developmental, neurological, or psychological impairments to voluntarily enroll by submitting identifying information and indicating the condition they have that may be relevant to their interactions with law enforcement officers.

CS/HB 1275 creates s. 402.88, F.S., to establish uniform requirements for the operation of Persons with Disabilities Registries by law enforcement agencies. Registries may include individuals who have a developmental, psychological, or other disability or condition that may be relevant to their interactions with law enforcement officers. The bill requires specified professionals to diagnose and certify a person’s condition prior  to eligibility for enrollment in a registry. The bill specifies enrollment and disenrollment processes for adults,  minors, and adults declared incapacitated.

The bill authorizes a local law enforcement agency to provide access to a registry, and relevant information from the registry, to law enforcement officers engaged in official duties.

The bill is linked to CS/HB 1277, which creates a public records exemption for all records and personal identifying information relating to the enrollment of individuals in a persons with disabilities registry held by a local law enforcement agency.

The bill has no fiscal impact on state or local government.

The bill was approved by the Governor on June 29, 2023, ch. 2023-312, L.O.F., and will become effective on January 1, 2024.