By Jamie Ducharme
March 5, 2019

The Ohio teenager who made headlines for getting vaccinated against his mother’s wishes told the Senate on Tuesday that spreading vaccine misinformation is dangerous — but urged the public not to vilify those who do so.

“Approaching this issue with the concern of education and addressing misinformation properly can cause change, as it did for me,” 18-year-old Ethan Lindenberger said while testifying before the Senate Health, Education, Labor and Pensions Committee on Tuesday. “Although the debate around vaccines is not necessarily centered around information, and concerns for health and safety, this is why education is so important, and also why misinformation is so dangerous.”

Lindenberger, who said his mother is an anti-vaccine advocate who adheres to the widely discredited idea that vaccines cause autism and brain damage, was not immunized against diseases including measles, chicken pox and polio until December of last year, after turning 18 and seeking care of his own accord. Lindenberger’s story has attracted widespread attention as the resurgence of preventable illnesses like measles brings the dangers of vaccine avoidance into clear focus.

The high school senior spoke Tuesday as part of a Senate hearing on vaccines and preventable disease outbreaks, along with doctors and public health officials. In his remarks, Lindenberger described learning about the scientific evidence that says vaccines are a safe and effective way to prevent disease, and do not cause autism. (On Monday, another major study on the subject found no association between the measles, mumps and rubella vaccine and autism.)

Over time, Lindenberger said, he began to doubt his mother’s positions on vaccines, and questioned the online sources she and others turned to for support. “Her beliefs were not true, and propagating these lies is dangerous,” Lindenberger wrote in his prepared testimony. “However, it is not necessarily ill-natured.”

Indeed, Lindenberger said the sites and organizations that peddle falsehoods — not the people who believe them out of concern for their loved ones — are the real problem. He said he looks to organizations like the Centers for Disease Control and the World Health Organization (WHO) for information, rather than sites preferred by his mother, such as Facebook. Social media platforms such as Facebook have been criticized for allowing misleading vaccine claims to spread, and several — including Pinterest, YouTube and Facebook — have taken steps to limit the influence of such posts. Facebook has made all health articles eligible for fact-checking, and ranks those with inaccuracies lower in users’ feeds, Vox reported.

“For certain individuals and organizations that spread this misinformation, they instill fear into the public for their own gain selfishly, and do so knowing that their information is incorrect,” Lindenberger said. “For my mother, her love, affection and care as a parent was used to push an agenda to create a false distress, and these sources which spread misinformation should be the primary concern of the American people.”

Lindenberger also questioned state systems that allow students to be exempted from mandatory vaccinations due to religious or philosophical objections. All but three states currently allow for such exemptions, though Food and Drug Administration Commissioner Dr. Scott Gottlieb recently suggested that this may not always be the case — a position not shared by some lawmakers.

“I was pulled out of class every year and told that if I did not receive my shots, I wouldn’t be able to attend my high school,” Lindenberger wrote in his prepared testimony. “But, every year, I was opted out of these immunizations and, because of current legislation, I was allowed to attend a public high school despite placing my classmates in danger of contracting multiple preventable diseases.”

Unvaccinated schoolchildren have been at the center of several of the measles outbreaks currently ongoing in the U.S. Twenty-one illnesses in New York City stemmed from a single Brooklyn yeshiva, health officials said last week, and an ongoing outbreak in the Pacific Northwest, where school vaccine exemptions are common, has prompted a surge of new immunizations in that region.

Federal and international health authorities have long said that vaccines are safe and effective for the vast majority of individuals, except those who have allergies or a small number specific medical concerns. In a report last year, the World Health Organization warned that resistance to vaccination is threatening years of public health progress against diseases like measles, which was declared eradicated in the United States in 2000.


Write to Jamie Ducharme at jamie.ducharme@time.com.

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