And what are the implications for organizations such as the Gates Foundation, which is plowing millions of dollars into preventative medicine for infectious diseases?
Seth Mnookin is a contributing editor at Vanity Fair and author of The Panic Virus: A True Story of Medicine, Science and Fear.
I asked him to crack open his reporter’s notebook and tell me more about what he discovered when he explored the scientific links between vaccines and autism — and what he learned about how debate in today’s society is as easily shaped by hearsay as actual fact.
SM: It wasn’t something that I had personal experience with, or that was really on my radar. It was something that, a couple of years ago, I started hearing about it more and more from my friends. I was curious.
The thing that struck me was that the discussions often seemed to be framed in the language of emotion. [Friends would say:] “It just feels like kids are getting too many vaccines these days.”
I didn’t know if it was right or wrong, but compared to how these same people would discuss things like climate change or evolution — scientific topics [for which] these people were dismissive of others who took on an emotional tenor — I was curious of why that was.
SP: So you dove in. What did you find? Why do people get emotional about this issue and not the others?
SM: Anything that involves children is very emotional.
Part of it is that it’s a topic that the media has done a really poor job of covering. It’s gotten a lot better over the last couple of years. One of my theses [in the book] is that once fear is present in a population, it’s really impossible to just un-scare people.
The fact that the initial coverage was so bad made it very hard to do a corrective. It’s also a topic that’s complicated and difficult to understand.
A lucky accident was that I did the shoe leather reporting first, and then spent a whole bunch of time reading science journals and going over evidence after that. I was then able to tell all these [sources] that I had no perspective and that I was trying to figure it out.
I’m trying to use this story as a lens to try to understand what counts as truth.
There’s an enormous amount of evidence that supports that there’s no connection between vaccines and autism. There are risks to everything, of course. But often, they’re not what they are portrayed to be. A lot of the people I termed “anti-vaccine activists” [in the book] feel very certain that vaccines are injurious in this way. When they discuss it, they talk about it with the language of certainty.
When scientists are trained, they’re taught that you can never say anything with certainty. Scientists won’t say I’m 100 percent sure human beings can’t fly, but will say that all of the evidence thus far says it to be that way.
Once I started reading the scientific papers, I expected there to be more evidence on both sides. This is not a subject about which there is a lot of legitimate debate related to autism.
SP: How much a role does history play? Today, almost no one gets the diseases for which we’re vaccinated.
SM: That’s huge. The fact that fear of a lot of these diseases has become pretty much notional for a lot of people in my generation has played a huge role.
We’re not familiar with people in iron lungs, or children who are hospitalized because of measles, or those who die of pertussis. The fear of any potential outcome [from a vaccine] far outweighs any fear of any of these diseases because people think they’re not going to get them.
When vaccines are effective, people think they need them less.
SP: Clearly there’s a disconnect between research and message. What’s the role of scientists to explain their science? Or is it the responsibility of government? Media?
SM: There’s not one. It’s all of the above.
Certainly, scientists — speaking very generally — have not done an adequate job explaining to the public what they do. Or accepting the fact that that is one of their responsibilities. They shouldn’t be able to accept public funding or support without making communication part of their job description.
Also, public health officials. When this current scare around autism cropped up 13 years ago, there was a sense with a lot of public health officials that everyone would see how ridiculous it was, and so there didn’t need to be a response.
That obviously wasn’t true. They’ve only realized and accepted within the last five years that they need to make sure people can get accurate information that’s easy to understand and to digest as it is to get wrong information.
And the media have a huge role. Despite the talk that people can get information on their own, our industry has the largest role in placing public perception on the issue.