Experts and advocates in the field of autism voiced concern following the announcement from the Department of Health and Human Services on Wednesday. The department plans to establish a registry of Medicare and Medicaid participants to aid research into understanding the “underlying factors” associated with autism.
Under the leadership of HHS Secretary Robert F. Kennedy Jr., the National Institutes of Health and the Centers for Medicare and Medicaid Services will partner up to build the database, using insurance claims data, electronic medical records and wearable technology, like smartwatches.
In an announcement, Kennedy stated that the agency is “lifting the veil — with complete openness and responsibility — to provide the truthful responses that families have been waiting much too long to receive.”
A representative from HHS refused to comply with a request for an agency official to comment on the project. This included discussions on implementation methods, defining autism parameters, and identifying ways to determine causative factors through collected data.
In a press statement, the organization announced that researchers will concentrate on tracking trends in autism diagnoses, evaluating the effectiveness of various medical and behavioral treatments, assessing how accessible these services are across different demographic groups and geographic areas, as well as examining variations in healthcare expenses related to these issues.
Scientists have identified a variety of
factors associated with the emergence of autistic characteristics
— most of which
exist before birth
including over 100 genes thought to be involved in 60% to 80% of instances.
Specialists who have been studying this condition for several decades now express concerns regarding patient confidentiality with the proposed plan.
There’s a “lack of clarity around how the data will be collected, how it will be shared, maintained, and how we know it’s going to be accurate,” said Alison Singer, president of the Autism Science Foundation, a nonprofit group that helps to fund evidence-based autism research.
Singer said her team has been inundated with calls and emails from people in the autism community concerned over the lack of transparency from federal health officials about how their private medical data would be obtained and managed.
Experts argue that the database project fails to incorporate insights from the autism community and disregards widely recognized genetic connections to the condition.
“We’ve had expert scientists who have been studying this issue for 20 years,” Singer said. “If there were one environmental toxin, I think we would have found it.”
The project, according to HHS, will focus on autism diagnosis trends over time, health outcomes from “specific medical and behavioral interventions,” access to care and economic burden.
The HHS spokesperson stated in an official release, “These wearable gadgets offer uninterrupted, everyday insights into sleeping habits, bodily movements, indicators of stress, environmental influences, among others — potentially aiding experts in pinpointing initial life elements linked to autism spectrum disorder.”
The representative chose not to address inquiries regarding how wearable gadgets would identify environmental hazards or which individuals would utilize these devices.
Michael Snyder, a professor of genetics and the director of the Center for Genomics and Personalized Medicine at Stanford Medicine, described the concept of utilizing wearable devices to gain further insights into autism as “a phenomenal idea.”
He pointed out that the difficulty lies in utilizing wearable devices to uncover the origins of autism, as this approach would optimally necessitate participants wearing these devices from a young age, prior to receiving a diagnosis, and would demand a substantial number of subjects.
Snyder is heading up a modest pilot project involving a wearable gadget developed by his group that tracks both environmental influences and sleep patterns along with physical activities. The aim is to explore potential connections to autism.
The singer mentioned that presently, wearable devices serve the purpose of notifying educators and caretakers when an individual with autism might be reaching a point of overwhelm and overstimulation, indicating they require some time off.
In the deep autism community, we’re utilizing wearable devices to provide early warnings about potential meltdowns or instances of self-harm,” she explained. “This allows for timely intervention.
Autism community backlash
Autism and its potential causes have long captivated Kennedy, beginning with his erroneous assertion connecting the MMR vaccine to the condition.
connections that have been thoroughly discredited by studies from multiple nations.
Specialists had forecasted that Kennedy would return to his role as health secretary — a prediction that became reality last month when he declared a research initiative aimed at pinpointing the underlying factors by September.
Following a
a report released in April by the CDC
that found a rise in autism rates in children in the U.S., Kennedy said the study would
look at “environmental exposures,”
including mold, food additives, pesticides and medicines.
Recently, federal health authorities had to retract their proposal for establishing a nationwide database of individuals with autism following significant opposition from the autistic community.
The registry was supposed to incorporate information from personal medical files. Autism advocacy organizations cautioned this might infringe individuals’ privacy rights and cause those with autism to steer clear of or decline necessary medical treatment due to concerns about their data being disseminated without consent, as stated.
the Autism Science Foundation
.
It’s not clear how the new initiative, which will similarly depend on medical records, stands out as distinct.
Zoe Gross, who leads advocacy efforts at the Autistic Self Advocacy Network, stated, “We haven’t been asked about this at all. In past administrations—both Democrat and Republican—we’ve had greater engagement with HHS and played a bigger role in significant initiatives related to autism.”
“If we had been allowed to provide feedback, we would have recommended greater clarity and additional research tools,” Gross stated.
The article was initially posted on
Sazua.com
