Lemkin Institute: The Proposed Autism Registry

This past week, remarks made by U.S. Health and Human Services Secretary (HHS) Robert F. Kennedy Jr. and National Institutes of Health (NIH) Director Dr. Jay Bhattacharya related to people diagnosed on the autism spectrum set off a firestorm of outrage across the nation. While Secretary Kennedy made outrageous, misleading, stigmatizing, and alarmist statements about rising rates of autism and the realities of life with autism, NIH Director Bhattacharya suggested that HHS was compiling a national registry of autistic people from medical data that should be protected by privacy laws.

The purpose of the database is reportedly to find the "cause" of autism by September.

After widespread push-back, some news sources have reported that HHS has walked back on the registry plan. But no official statement has been made and we have been unable to find the "written statement" mentioned in these news sources.

The Lemkin Institute for Genocide Prevention and Human Security stands in solidarity with the autistic community in the United States. We remind everyone of the importance of privacy to democracy and the danger of any state creating registries and lists of people whom it finds to be burdensome. We also underscore the value of all life and our collective responsibility to protect and defend the lives of all people here with us in the world. The Trump Administration has offered us many signals that it does not respect the value of life and that it in fact embraces dangerous eugenicist concepts of national purity, as reflected, for example, in its approaches to immigrants and trans people.

The National Socialist T-4 "Euthanasia" Operation, which killed an estimated 270,000 people before and during World War II, provides us with a sobering warning about the dangers of allowing a state to even suggest the creation of registries of people believed to be "“catastrophic for our country,” as Secretary Kennedy so tellingly described people with autism. The Nazis described the victims of T-4 as "life unworthy of life" and "useless eaters." Like Secretary Kennedy, who claimed that autism is expected to cost the U.S. $1 trillion by 2035, the leaders of the T-4 program were concerned with culling people considered to be too expensive. They killed people who were diagnosed with physical and intellectual disabilities, or who were considered to be 'asocial,' using starvation, medical overdosing, and gassing. This number includes about 10,000 German children who were starved to death in the first phase of the operation. The T-4 operation provided a model -- as well as the hardened leadership for -- the death camps of the Holocaust.

In democracies, genocide creeps up the citizenry slowly. The United States of America has the benefit of hindsight and of a population that has been raised, for the most part, to embrace the principle of individual liberty.

Dr.  Bhattacharya's concept of an autism registry is a warning, even if HHS decides to shelve it for now (which is not at all clear). Americans must take these leaders very seriously and not allow the country to reach the point of no return.

Read the full statement here.