An Objective Lens: Seth Mnookin on the autism-vaccine controversy

 

An Interview with Seth Mnookin, Author of The Panic Virus: A True Story of Medicine, Science, and Fear 

One quarter of American parents mistakenly believe that vaccines cause autism in children. Despite overwhelming scientific evidence to the contrary, many parents have taken the medical advice of celebrity activist Jenny McCarthy and researchers whose work has been discredited. Why do so many parents continue to ignore the recommendations of their pediatricians, the NIH and the CDC, the people and institutions responsible for keeping children safe? The answers lie in The Panic Virus, where author Seth Mnookin masterfully untangles facts from fiction in the autism-vaccine debate. Mnookin's objectivity--- he has no previous connections to autism, pharmaceuticals, or the science of medicine--- allows his voice to resonate over this increasingly vitriolic and heart-breaking medical controversy. The Panic Virus explains how and why the anti-vaccine movement grew to prominence, exposes the misaligned incentives of several anti-vaccine figures, and denounces the culpable journalists who failed to report the truth. The Panic Virus is not just another book about autism: it descends into a world of contradiction, lies and media manipulation, from which readers emerge entertained, informed and firmly on the side of science.  

Seth Mnookin is a contributing editor at Vanity Fair where he’s written about the American media presence in Iraq, Bloomberg News, and Stephen Colbert. In 2002 and 2003, he was a senior writer at Newsweek, where he wrote the media column “Raw Copy” and also covered politics and popular culture. His work has appeared in numerous publications, including New YorkWiredThe New York TimesThe Washington Post, The Boston GlobeSpinSlateSalon.com, and other publications. Mr. Mnookin graduated from Harvard College in 1994 with a degree in History and Science, and was a 2004 Joan Shorenstein Fellow at Harvard’s Kennedy School of Government.

ASF staff member Jonathan Carter spoke with Mr. Mnookin about his new book, which you can buy here.

 

JC: What drew your interest to this project?

SM: It started a couple of years ago when I started seeing the issue come up in the news. I started to hear and read about it for two reasons: It was around the time Jenny McCarthy was appearing in the media to discuss her books and her claims about what had happened to her son. And also this was a period in which a lot of my friends were having children, so there was a fair amount of thought going into decisions over child rearing.

JC: You write a great deal on the role of the media, and the disservice they have done to the American public. What could journalists have done differently in covering this topic?

SM: It’s a subject I’ve thought a lot about. I think there really needs to be an awareness on the part of the press that we need to be well versed in whatever it is that we are covering. We need to understand the crux of what people are saying and to understand if there is any validity to their claims.

A parallel that I think that can be instructive is business reporting. You wouldn’t have someone who doesn’t understand a quarterly earnings report write about business. You need to have some training and some awareness of the language and the culture of business. If I wrote a story tomorrow that said that IBM was about to buy Boeing, and it was based on what only one person said, other people wouldn’t write that, and I would look ridiculous. But in science and health reporting you get the opposite. If someone writes something outrageous, the justification is that it is outrageous, and thus controversial. And if you don’t cover something controversial, your editors and your audience will ask why you didn’t cover that story.

JC: In The Panic Virus, you lament that so many newspapers have slashed their science and health news. Would you also attribute the carelessness of current science and health reporting to the 24-hour news cycle and the speed at which news is being disseminated?

SM: I don’t think its just necessarily carelessness, but I think the way we consume news now interacts with this whole issue. Right now, there is this feeling that you’re always ‘on’. Unfortunately, [journalists] don’t always have the luxury or the freedom to be judicious and hold off on certain stories. However, there are many, many instances where we are judicious. The previous example about business, for example. I think that there needs to be a recalibrating, because in the media you get an avalanche effect very quickly, and it’s much more difficult to stop an avalanche than it is to start one. Its not something that’s going to be easy, but I think we are increasingly seeing the consequences of reporting news stories that reflect ideas that are not well researched or reputable.

JC: You spend several chapters discussing the history of inoculations and vaccinations in the United States. How is today’s anti vaccine movement similar and different from previous anti vaccine movements?

SM: If you look back historically, there exists a cyclical pattern. First, disease is widespread in society or in a culture and everyone is aware of its dangers and its ravages. When that is the case, people are very eager to develop and utilize vaccines. A perfect example is the Salk polio vaccine. Then, a vaccine starts to do what vaccines do, which is bring down the incidence of a disease in a given population. Once that disease becomes an abstraction, the concerns about vaccines then take precedence in our discussion. This is a cycle that we’ve seen throughout the 20th century.

There also traditionally have been discussions about personal autonomy versus state control, and I think that is very understandable. It [vaccination] really is a unique public health issue, and there is a direct link between an individual’s actions and the societal implications. If I didn’t get vaccinated, and I then get a disease, I put you and everyone else at risk.

Vaccination is a really tricky and difficult issue involving personal autonomy and societal implications. In terms of the state dictating what people can or can’t do, it’s not quite as unique as some people who are opposed to vaccines make it out to be. There are lots of things we can’t do to our body, like put in a given amount of alcohol and getting behind the wheel of a car. Like setting ourselves on fire and running into a playground. There are plenty of things that we are not permitted to do to our bodies. [Vaccination] feels different because it is something that is prescriptive instead of prohibitive.

JC: How far into your research did you go before you made this determination for yourself, that there is no evidence to suggest that vaccines can cause developmental delays?

SM: I tried to get through as much of the research phase as possible without making any decisions, and leave determinations for the writing phase. I didn’t want to close myself off to hearing what people were saying. I wanted to talk to people on every side of the issue, and I didn’t want to decide that vaccines were safe and close myself off to the issue to those who thought they weren’t. I kept the reporting phase just as ‘information intake’ and then the synthesis and writing phase I tried to do my own analysis. That sounds sort of silly at this point, but separating the two wasn’t as hard as it might seem. This is an issue that is so complicated and there are so many scientific disciplines that come into play. I had to make sure I understood epidemiology, I had to make sure I understood virology, I had to make sure I understood the biochemical mechanisms through which given diseases are spread. I had to understand what we do and do not know about autism. There was an enormous amount of basic learning that I had to get through. And, really that was one of the reasons that I wrote this book, because at the time I looked around at the books that were written on this subject and you had books by people written by Paul Offit, by people like Jenny McCarthy, and reading those right off the bat, I understood how as a parent I could look at those books and see all of them representing a viewpoint that the author might have had beforehand. I wanted to try and do something where I had no knowledge of this beforehand. I am not a vaccinologist, I am not a doctor. No one I know works for Pfizer. So I could come at it from a different angle. And then I wanted to lay it out in a way where people could follow my line of thinking. I wanted my book to read ‘this is what I think is true, and this is what my thought process was. I’ve talked to a lot of people about my book and Paul’s book, and I think that people who haven’t read them have said ‘you two are coming out with the same book’ which I feel like could not be less true. Paul knows and understands things about science and medicine and the culture of medicine that I never will. I think he has a standing and a level of respect in the pediatric and medical communities that I don’t. They don’t know me. By the same token, people who are coming into this, who are skeptical might look at me as someone who is basically like them. In a similar way, Paul’s book does a brilliant job in laying out the evolution of his thinking. Not in terms of the evolution of this thinking regarding vaccines because that is something that he learned about and was trained about decades ago, but the evolution of his thinking about the anti-vaccine movement. I think he explains very passionately and very well about why he feels so strongly about that.

JC: When I spoke with Dr. Offit, he mentioned that the majority of people who don’t vaccinate tend to be in the upper-middle, upper classes. You also talk about this in one of your recent articles in Newsweek. Why do you think this is?

SM: There are a number of different reasons, but let me say that I’m wary of using anecdotes and expressing that as data. I have my anecdotal experience, but if you look at the data and look at communities which have very high percentages of vaccine noncompliance rates, you see places like Ashland, Oregon, and coastal communities in California that tend of be wealthier than the country as a whole, more highly educated than that country as a whole and whiter than the country as a whole. It tends to be people who are more environmentally conscious.

JC: A return to the organic.

SM: Yeah, Prius drivers. [laughs] and I’m not saying that dismissively, my mom drives a Prius, but people who are self-consciously concerned with organic, with taking a pro-environmental stance. That dovetails with a general skepticism about the government and certainly about pharmaceutical companies. You have all those forces intermingling, and this is a culture for which the term helicopter parenting was invented. This group of people who have taken obsessive parenting to a new level and vaccines are something that intuitively don’t make a lot of sense. We can’t see any of the actors in play. When we catch measles we don’t see the measles virus going into us, when someone is vaccinated, we don’t see what is going into his or her body. All we see is that there is a needle in there and pain. You get a lot of different factors dovetailing at once. That is another reason why I became so interested in this because this is the same culture that is extremely haughty and dismissive of, for instance, creationists, yet you have the same anti-science going on here.

JC: On December 23rd you wrote a blog post entitled Jenny McCarthy: An enemy of rational discussion where McCarthy claims that Elias Tembenis died as a result of a reaction to his DTaP (Pertussis/Whooping Cough) vaccination. In the blog post, you point out the hypocrisy of McCarthy and the Age of Autism community, who claim that the Vaccine Court [who ruled in favor of the Tembenis family] has no credibility and that its rulings cannot be trusted, and yet with the Elias Tembenis case, they accept the ruling as definitive proof. Given this type of behavior, what do you think is the endgame of the anti-vaccine movement?

SM: I don’t think that you can look at an endgame. This is an issue that is so emotional, not just with people I disagree with. This is very emotional for people I agree with, and when you have issues involving children you don’t get endgame thinking. I don’t think that there is some grand strategy; I think that a lot of this is very instinctive.  Let me give you an example with people I agree with. A couple of days ago I wrote a piece about the sort of qualms I had with the [Brian Deer] BMJ story that was released and the qualms I had with how it was presented and the qualms I had with some of its actual content. The content, my main sticking point, was that there was a heavy emphasis in the piece on the recollections of the parents more than a decade after the fact. I think its hypocritical on the one hand to say one of the problems with Andrew Wakefield’s data was that it relied on the recollections of parents and then to turn around and say we know his data was fraudulent because of the recollections of parents. I have a problem with that. However, I also wrote in my book and in my post that no one has done more to uncover the reality of the situation than Brian Deer. And I got a comment on my blog and a few emails slamming me for speaking outside of school, so to speak.

There is a fear, a feeling on both sides that if you cede any ground, you are going to lose the fight. I think its very problematic if you want to argue that you’re in favor of open inquiry and in favor of reasoned discussion only as long as that inquiry and discussion supports what you want to say. When you’re dealing with this type of issue, I think it’s asking a lot for people to take an endgame into account. I think it makes it really, really difficult for these camps to meet and have a discussion when the instinct is to try and kneecap whenever someone disagrees with what is said. I think one of the tragedies of all of this is that on the most fundamental level, the goals of the ASF and the goals of Autism One are the same, which is to find ways to help families dealing with autism. I think and I hope that everyone can agree 100% that families dealing with developmental disabilities do not get the support that they need in any way. They don’t get the support through the educational institutions, there is not the social safety net that there should be, there is not the societal understanding that there should be, and that is horrible, that speaks very poorly of us as a society that that’s true in the 21st century, that there is still that incredible lack of support. I think part of the real problem is the tenor of the discussion. It’s really hard to sit down at a table and work when the person you are sitting across from has accused you of actively killing children, of being engaged in a conspiracy to poison infants. It’s hard to find common ground there. I know one of the things that ASF is very focused on, and I believe rightly so, is the ways in which the focus on vaccines has meant that funding has not been able to go towards other possible environmental triggers, as well as other intervention research to support ways to help adults with autism, and I couldn’t agree with that more. There has to be some way for these two groups to work together.

JC: What surprised you most in writing this book?

SM: I had no awareness of how nasty the debate can get. I hope that I’m the type of person that would choose to take assignments and perform research regardless of what the consequences might be, and I had no concept of the level of distrust and hatred. I find a lot of the emails I get and messages I get to be incredibly, incredibly difficult to hear. I knew it was an issue about which people felt strongly, but I guess I thought maybe it was akin to the environmental issue, where there are people with huge fundamental disagreements, but there aren’t the same type of motives, of accusations of murder. I found that very surprising

JC: What do you expect to be the biggest criticism of your book?

SM: One thing that I struggled with is that there are a couple of places in the book where I talk about personal experiences and stories of parents who have lost or almost lost children through vaccine preventable diseases. I think in some ways I was doing the same things that I have criticized people like Jenny McCarthy [of doing], using a personal narrative to make people connect with a story that I’m telling. If I believe that anecdotes do not equal data, then that’s true whether or not I’m talking about Kelly Lacek or if I’m talking about Jenny McCarthy. I feel ultimately that it was justified because I wasn’t saying that these anecdotes shouldn’t be interpreted as data. I was saying ‘here’s the data and here is an anecdote that illustrates it’. I wasn’t saying ‘this is what happened to this one person and so this is my science’. I was saying ‘this is my science, and I can illustrate that by talking about this one person'.

I think that one of the difficulties with debating people who do not believe the science is that it’s like whack a mole - it’s a constantly moving target. So I have no doubt that there will be a million different things that will be pointed to as examples of what I didn’t include that supports Andrew Wakefield. The other night I watched his CNN interview, and this came up. He [Wakefield] said there are these five other studies by people like Arthur Krigsman that verify his bowel research. Anderson Cooper probably didn’t know, because he can’t spend that long on every segment, that Arthur Krigsman was someone who Wakefield has worked with, someone several special masters in the Omnibus autism trial criticized. Krigsman is not independent confirmation [of Wakefield’s research].

To adequately address all of the [anti-vaccination] criticisms [of this book] would be literally an infinite project. And I think that’s part of the problem. When you’re dealing with a situation where there’s no standard of proof that is going to be accepted, that means that there is nothing you can do to adequately address their concerns. That’s not who I am trying to reach. I am trying to reach people who haven’t made up their mind about this already. I’m trying to reach people who want to learn about vaccinations and feel like they haven’t found places to look. I’m trying to show people why they should trust the CDC and the AAP and why if they’re looking for reliable sources of information, they should go online to the CDC and read what the CDC says about all of these things. I’m trying to show why people should trust Paul Offit.

Seth Mnookin's blog can be found at http://sethmnookin.com/blog, and you can learn more about The Panic Virus on its Facebook page. You can follow Seth on Twitter at @sethmnookin.  

Click here to purchase The Panic Virus: A True Story of Medicine Science and Fear.