It’s not a “registry,” it’s a “real-world data platform” to “link existing datasets,” HHS told me.

The news that the U.S. government was creating an “autism registry” sparked a major outcry in recent weeks. One petition against it gained 30,000 signatures in one day, eventually reaching nearly 50,000 names.

The backlash seemed to work. “We are not creating an autism registry,” an HHS spokesperson told me.

But the difference seems to be in the name. The agency is creating a “real-world data platform” to “link existing datasets” for the research into causes of and treatments for autism, the spokesperson confirmed.

“They’re saying it’s not an autism registry, but it sounds like they kind of just changed the name of it,” said Amy Marschall, an autistic psychologist.

Kennedy announced at a cabinet meeting last week that the new study has been launched.

“By September, we will have some of the first answers. Within six months of that, we will have definitive answers,” Kennedy said.

Put aside the idea of science ever having “definitive” answers, much less in a matter of months. There are a LOT of concerns and unanswered questions about this database.

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The HHS didn’t respond to any of my other questions, so there’s a lot we don’t know. Can you opt out? (Personally, I’m assuming not, or they would have said so.) What privacy and security measures are in place? What other “chronic conditions” will be studied in the same way? And how many people will be in this database and others like it?

I think people heard “registry” and thought (understandably) that could mean anyone with an ASD diagnosis is automatically added.

That’s the case, actually, in seven states. Delaware, Indiana, North Dakota, New Jersey, Rhode Island, Utah and West Virginia track all diagnoses in mandatory autism registries — sometimes even scouring hospital records for them.

It’s really unclear if that’s the case with this federal database.

What is clear is that the data will draw from some pretty disparate and unusual data sets: databases across the federal government, potentially ranging from Medicaid to Veterans Affairs, as well as from pharmacy chains, health organizations, insurance claims and medical bills, and wearable devices like smart watches.

Even if this is a limited database, there are still significant concerns with all of that. How are they getting informed consent from participants? How will they keep extremely sensitive health information private and secure? And will this database one day be used against autistic people?

“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” Marschall asked.

I wrote about this database, and about state-level autism registries, for the Guardian today — I hope you’ll read and share.

In the meantime, I’ll continue reporting on these issues, so please get in touch with any tips or ideas. You can reach out via email (melodyaschreiber@gmail.com) or Signal (melodyschreiber.06).

Top image: hepingting