Experts and advocates of autism expressed his warning after the Ministry of Health and Humanitarian Services said on Wednesday that it intends to create a database for medical patients and the Muslim aid school to support a study aimed at identifying “root causes” of autism.
Under the leadership of the Secretary HHS Robert F. Kennedy JR. , The National Institutes of Health and Medicare and Medicaid service centers to build a database, using insurance claim data, electronic medical records and wearable technology, such as smart watches.
In a statement, Kennedy said that the agency “withdraws the curtain – with transparency and complete accountability – to provide the sincere answers that families have long waited for to hear.”
A HHS spokesman rejected a request to allow an agency official to discuss the project, including how it is implemented, how autism will determine and how the data will be able to determine its causes.
In a press release, the agency said that the researchers will focus on the trends of autism diagnosis, the results of medical and behavioral treatments, to obtain care and disparities by the population and geography composition, and health care costs.
Scientists have identified a variety of Risk factors associated with developing autism features Most of them It exists before birth – Including more than 100 genes believed to play a role in 60 % to 80 % of cases.
Experts who have already spent decades in the search for the disorder said they were concerned about the patient’s privacy under the new plan.
“There is no clarity on how to collect data, how it will be shared, and how we know it will be accurate.”
The singer said that her team was immersed in calls and emails from people in the autistic community concerned with turning off transparency from federal health officials on how to obtain and manage their medical data.
Experts say that the database project does not include inputs from the autism community and ignores the genetic links established to this disorder.
“We had expert scientists studying this issue for 20 years,” Singer said. “If there is one ecosystem, I think we would find it.”
The project will focus, according to HHS, on the trends of autism diagnosis over time, and the health results of “specific medical and behavioral interventions”, to reach care and economic burden.
In a statement, HHS spokesperson said, “Wearable devices can provide continuous and realistic data on sleep patterns, physical activity, stress marks, and environmental exposure, and more-and all of them may help researchers identify early life factors associated with autism spectrum disorder.”
The spokesperson did not respond to a question about how wearable devices are discovered ecosystems or their use.
Michael Snyder, Professor of Genetics and Director of the Genome Center and Personal Medicine in Stanford Medicine, called on the idea of using wearable devices to learn more about autism in general, “a tremendous idea”.
He said that the challenge is that the use of wearable devices to obtain the causes of autism will require the participants to perfectly wear them at an early age, before the diagnosis, and also requires a large sample size.
Snyder leads a small experimental study with a device that can be worn by his team measures environmental exposure as well as levels of sleep and activity, to see if there are any bonds of autism.
Singer said that at the present time, wearable devices are used only to alert teachers and care providers when the person with autism becomes immersed and exaggerated, and needs a break.
She said: “In a deep autism community, we use wearable devices to give an early warning about when the collapse may occur or self -infection may occur.” “This enables someone to intervene.”
Autism society reactions
Autism and his potential causes were an obsession for Kennedy for decades, starting with his wrong claim that connects measles, mumps and measles (MMR) for turmoil – The widespread intercourse with research from many countries. Experts predicted that Kennedy would reconsider his mission as Minister of Health – who was achieved last month when he announced a study to determine the root causes by September.
After a A report published in April by the Centers for Disease Control and Prevention This has found a rise in the rates of autism in children in the United States, and Kennedy said that the study would be done See “Environmental Exposities”, “ Including mold, food additives, pesticides and medications.
Federal health officials have been forced to back down from a plan to create a national record of people with autism after a violent reaction from the autism community.
The record could have included data from private medical records, which warned groups of defense of autism against violating people’s privacy and leading to people with autism to avoid or reject medical care “for fear of sharing their data without their permission,” according to what I said. Autism Science Corporation.
It is not clear how the new project, which also depends on medical records, varies.
“None of us was consulted on this issue. In previous departments, both democracy and the republic, we had more contact with HHS and more participation in the main projects involved in autism,” said Zoe Gross, director of the invitation to autism.
Gross said: “If we were able to give inputs in this, we would have suggested more clarity and various research tools.”
This article was originally published on NBCNEWS.com
