HHS Says Federal Government Not Creating Autism Registry

The director of the National Institutes of Health had recently told a meeting that a new autism registry was being established.

The Department of Health and Human Services building in Washington on Aug. 14, 2018. Samira Bouaou/The Epoch Times

The Department of Health and Human Services (HHS) said on April 25 it is not creating a registry for autism, after some advocates raised concerns about what the National Institutes of Health (NIH) director had described as a new autism registry.

“We are not creating an autism registry,” an HHS official told The Epoch Times in an email.

Dr. Jay Bhattacharya, director of the NIH, told a meeting on Monday that NIH’s real-world data platform, drawing data from pharmacy chains, doctor’s offices, medical claims, and wearable items such as smartwatches, would be used in “developing national disease registries, including one, a new one for autism.”

Some autism advocates said they were worried about creating a registry for autism, because they said it could lead to people’s private health information becoming public.

“The lack of details regarding how the data will be collected and used has worried families who are rightfully concerned about privacy and confidentiality,” the Autism Science Foundation said in a statement.

Bhattacharya said that the data platform would draw data from other federal agencies, including the Department of Veterans Affairs, in addition to “real-world sources” such as pharmacies. He said that researchers would be able to work on the platform but not download the data.

“And there are state-of-the-art protections to make sure that, although linkages across the datasets will be permitted inside the platform, these linkages do not in any way threaten or the confidentiality of patients,” he said.

The HHS official said that the description of a new registry was actually referring to “link[ing] existing datasets to support research into causes of autism and insights into improved treatment strategies.”

An NIH spokesperson told The Epoch Times in an email: “The NIH-led initiative includes the development of a secure data repository that will enable researchers to analyze large-scale, de-identified data to better understand the causes of conditions like autism and chronic diseases. This is a proven research approach—similar to how the SEER database has advanced our understanding of cancer. These efforts are not about tracking individuals. All NIH-managed databases follow the highest standards of security and privacy, with the protection of personal health information as a top priority.”

Autism registries already exist in multiple states, including Delaware and Utah. The goal of the Delaware registry is to “collect basic descriptive information on the individuals with autism, to track changes in prevalence over time, to inform the planning of service delivery to children with autism and their families and to facilitate autism research,” according to a description on the state government’s website. Delaware law requires health professionals who diagnose a child with autism to report information on the child to the registry.

Health Secretary Robert F. Kennedy Jr. recently announced a large-scale effort to pinpoint the causes of autism, a developmental disability that can have symptoms including difficulty learning and speaking. Bhattacharya, whose agency is running the project, told reporters in Washington this week that researchers want to gain access to the medical records of many Americans. He said that the patient data would be anonymized to protect privacy.

The Autistic Self Advocacy Network, which initially expressed concern about Bhattacharya’s remarks about an autism registry, said after the HHS denied a new registry is being created that if the platform does not include personally identifiable information (PII), “then it is normal practice to distribute that information to researchers without individuals’ specific consent.”

The group said it supports using federal datasets for research if privacy is protected.

“On the other hand, if individuals are identifiable based on the provided information, then serious concerns about privacy are very much warranted,” it added.

“PII should not be shared with researchers without rigorous consent procedures and additional privacy protections. Without more information about how this database will work, which NIH has yet to provide to our community, we will continue to have serious concerns about privacy for autistic people who are included in this database.”