Autism researchers and advocates in the United States are pushing back against the creation of an autism database that is meant to track the health of autistic people in a major research study.
While the US Department of Health and Human Services (HHS) denies it is a registry, the agency did confirm a sweeping database of autistic people will power a $50m study on autism. US health secretary Robert F Kennedy jnr said last week that he planned to announce results from the study within months.
A petition against the registry gained tens of thousands of signatures in a single day – jumping from 2,500 to nearly 35,000 signatures within 24 hours. The researchers are highlighting ways such databases could be misused.
“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 did not 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,” he said.
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 data sets” for the research into causes of and treatments for autism, the spokesperson said.
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But Amy Marschall, an autistic psychologist who has long objected to mandatory autism registries, said: “They’re saying it’s not an autism registry, but it sounds like they kind of just changed the name of it.”
The health agency did not respond to questions about whether individuals would be able to opt out of the database, how it would be structured, what kind of security and privacy measures would be taken or whether similar databases would collect information on other conditions.
The causes of autism spectrum disorder, a range of neurological and developmental conditions that usually centre on how people interact, communicate, learn and behave, have already been identified as genetic in most cases.
Even so, Kennedy announced at a cabinet meeting last week the new study had been launched. “By September, we will have some of the first answers. Within six months of that, we will have definitive answers,” he said.
Smith said he was worried that the database and research could worsen stigma around autism and could keep individuals and families from seeking diagnoses and care.
“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 said.
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.
Diana Schendel, professor at the AJ Drexel Autism Institute at Drexel University, said all these concerns were why, typically, “human research protections are in place, to protect against that kind of damage and to protect the people’s interests”.
Other research projects created registries of participants, but these undertook key steps to ensure people were protected before the projects begin, she said.
Usually, research registries invite participants and offer informed consent on how research will be conducted and how their information will be used.
“You can also create databases using existing data, which is what they seem to be describing,” Schendel said of the HHS project, but “you can’t just collect the information and then ask permission later”.
The national US project could jeopardise important research on autism, Schendel said. “It’s going to make people even more wary of participating in research. They could withdraw from projects that are already going on.”
Kennedy’s aggressive timeline for results was also “a red flag”, she said.
“The idea that you can take a lot of different data sets and pool them together into a single data set and perform an analysis with any kind of meaningful answer in a very short period of time is naive,” Schendel said. “It would be a mess.”
To gather the data, the National Institutes of Health is exploring partnerships with other federal agencies, including the Centers for Medicare and Medicaid Services, the US Centers for Disease Control and Prevention, the Department of Defense, the Department of Veterans Affairs and others.
Jay Bhattacharya, the NIH director, also proposed collecting data from pharmacy chains, health organisations, insurance claims and medical bills, and wearable devices such as smart watches, to conduct “real-time health monitoring”.
Bhattacharya’s proposal to use private data sets will also likely run into privacy concerns, as companies had collected that information for other purposes and may not have permission to share it or use it for research.
“The companies, I would imagine, would be very concerned, because they’re responsible for the privacy of that information,” Schendel said.
Seven states – Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah and West Virginia – have mandatory autism registries. Cities and local police departments sometimes also maintain registries of disabled people.
There are differences in how states collect the information. In North Dakota, for instance, clinicians are required to submit autism diagnoses. Utah has a similar requirement, but it also audits hospital records. – The Guardian
