Autism experts and defenders expressed alarm after the Department of Health and Human Services said Wednesday that it intends to create a patient database enrolled in Medicare and Medicaid to support a study aimed at identifying the “root causes” of autism.
Under the leadership of the secretary of the HHS, Robert F. Kennedy Jr., the National Institutes of Health and the Medicare and Medicaid service centers will be associated to build the database, using insurance claims data, electronic medical records and portable technology.
In a statement, Kennedy said the agency is “withdrawing the curtain, with full transparency and responsibility, to deliver the honest responses that families have expected too much to listen.”
An HHS spokesman rejected a request to make an agency official be available to discuss the project, including the way it will be implemented, how will autism define and how data can identify its causes.
In a press release, the agency said that researchers would focus on autism diagnostic trends, the results of medical and behavioral therapies, access to care and disparities for demography and geography, and medical care costs.
Scientists have identified a variety of risk factors linked to the development of autistic features, most of which exist before birth, including more than 100 genes that are believed to play a role in 60% to 80% of cases.
Experts who have already spent decades investigating the disorder said they care about the patient’s privacy under the new plan.
There is a “lack of clarity about how the data will be collected, how they will be shared, maintained and how we know that it will be necessary,” said Alison Singer, president of the Autism Science Foundation, a non -profit group that helps finance the investigation of autism based on evidence.
Singer said that his team has been flooded with calls and emails of people in the community of autism concerned with the lack of transparency of federal health officials about how their private medical data would be obtained and administered.
He The database project does not include contributions from the autism community and ignores well -established genetic links with the disorder, experts say.
“We have had expert scientists who have been studying this issue for 20 years,” said Singer. “If there were an environmental toxin, I think we would have found it.”
The project, according to HHS, will focus on the tendencies of the diagnosis of autism over time, the health results of “specific medical and behavioral interventions”, access to care and economic load.
In a statement, the HHS spokesman said: “Portable devices can provide continuous real world data on sleep patterns, physical activity, stress markers, environmental exhibitions and more, all of which can help researchers identify early life factors associated with autistic spectrum disorder.”
The spokesman did not answer a question about how portable devices would detect environmental exhibitions or who would be using them.
Michael Snyder, genetics professor and director of the Center for Genomics and Personal Medicine at Stanford Medicine, described the idea of using laptops to learn more about autism in general a “phenomenal idea.”
The challenge, he said, is that the use of wearables to obtain the causes of autism would ideally require participants to use them at an early age, before a diagnosis, and would also require a large sample size.
Snyder leads a small pilot study with a portable device that his team invented that measures environmental exhibitions, as well as sleep and activity levels, to see if there is any link to autism.
Singer said that currently, wearables are only used to alert teachers and caregivers about when an autistic person can be overwhelmed and overestimulated, and need a break.
“In the deep community of autism, we are using wearables to give an early warning about when a crisis can occur or self -desolity can occur,” he said. “That allows someone to intervene.”
Autism community reaction
Autism and its possible causes have been an obsession for Kennedy for decades, beginning with its false claim that links the measles vaccine, papers and rubella (MMR) with the disorder, a connection widely discredited by the investigation of several countries. The experts predicted that Kennedy would visit his mission as Secretary of Health, which came true last month when he announced a study to identify the root causes in September.
After a report published in April for the centers for disease control and prevention that found an increase in autism rates in children in the United States, Kennedy said the study would analyze “environmental exhibitions”, which include mold, food additives, pesticides and medications.
Federal health officials were forced to recover a plan to create a national registry of people with autism after a violent reaction from the autism community.
The registration would have included data from private medical records, which warned autism defense groups that could violate the privacy of people and take people with autism to avoid or reject medical attention “for fear that their data will be shared without their permission,” according to the Foundation of Autism Sciences.
It is not clear how the new project, which will also depend on medical records, is different.
Zoe Gross, director of Defense of the Autistic Auto Defision Network, said: “None of us has been consulted about this. According to previous administrations, both Democrats and Republicans, we have had more contact with HHS and more participation in important projects that involve autism.”
“If we could have given information about this, we would have suggested more clarity and different research aids,” said Gross.
