The backlash against efforts by Robert F. Kennedy Jr. to study autism by obtaining private medical records and launching a registry to track Americans with the condition has extended to a call by a doctor for him to be excommunicated from the fold of Catholicism.
The Mayo Clinic describes autism as the ‘type of brain development condition provided by’ and how the condition can look differently in each person, while RFK Jr., the secretary of the Department of Health and Human Services, has suggested the condition is preventable and gone so far as to say that there has been an ‘autism epidemic.’
On April 17, Kennedy told Cabinet meeting at the White House: ‘We’ve launched a massive testing and research effort, and people all over the world are going to be involved with hundreds of scientists behind this effort.’ We’ll know what caused the autism epidemic in September and be able to cut out these exposures.”
The National Institutes of Health (NIH) announced Monday (April 21) that as part of the study it is compiling private medical records about a sampling of the US population, from a variety of federal and commercial databases, ‘to allow researchers who will examine the ‘comprehensive,’ ‘broad coverage’ patient data.’
According to CBS News, NIH Director Dr. Jay Bhattacharya said, “The idea of the platform is to bring together the existing data resources that are reallocated, in most cases, and they are difficult to retrieve.” “The NIH itself will very often pay multiple times for the same data resource. ‘Data resources even within the federal government is difficult to get.”
Among the data are medication records from pharmacy chains, healthcare from patients treated by the Department of Veterans Affairs and Indian Health Service, private insurers, smartwatch and fitness tracker data.
At the same time, the NIH is also in talks with the Centers for Medicare and Medicaid Services in order to broaden ones in which they have access to their data.
‘Through normal NIH processes’, scientists studying the records will be chosen, described Bhattacharya, saying he will be joined by 10 or 20 outside groups. Bhattacharya said the teams will not be able to download the private medical data and that ‘state of the art protections’ will be provided for confidentiality.
The NIH will also launch a new disease registry to track Americans with autism along with the data study.
The idea has been met with backlash from autism advocates who opposed the idea of a ‘robust and secure computational data platform for chronic disease and autism research.
One Twitter user said she is a ‘mother of a child with autism’ and did not ‘approve’ of the NIH gathering medical records for the study.
“Terrifying. Describing ‘this’ as I am a mother of a child with autism, I do not approve this.” His medical records should be kept private. There is a great need for funding of programs which benefit our children (not “studies”), not.
‘I do not consent to this‘, said another user. This is not ok.”
The NIH is going to share the findings of the study using a ‘rapid’ timeline, Bhattacharya said.