Battling misinformed consent: How should we respond to the anti-vaccine movement?

As Vaccine Awareness Week, originally proclaimed by Joe Mercola and Barbara Loe Fisher to spread pseudoscience about vaccines far and wide and then coopted by me and several other bloggers to counter that pseudoscience, draws to a close, I was wondering what to write about. After all, from my perspective, on the anti-vaccine side Vaccine Awareness Week had been a major fizzle. Joe Mercola had posted a series of nonsensical articles about vaccines, as expected, but Barbara Loe Fisher appeared to have sat this one out, having posted nothing. Well, not quite. More like almost nothing. I noticed that the NVIC did publish a new post earlier this week that I had somehow missed entitled Plug Into New NVIC Advocacy Portal & Protect Vaccine Exemptions. What is this portal? Barbara Loe Fisher describes it thusly:

The weeklong series of articles about vaccination published on Mercola.com includes the launch of NVIC’s Advocacy Portal, which is a free online interactive database and communications network that empowers citizens to protect and enhance vaccine exemptions in all 50 states.

And there you have it, the real mission of the anti-vaccine movement in general and the NVIC in particular, to discourage vaccination wherever possible under a false mantle designed to camouflage its true purpose, the mantle of “informed consent” and “health freedom.” What, you say? Who could ever argue with the concept of informed consent or health freedom? I can, not because I don’t support the right of individuals to determine what they will do with their bodies or what treatments they will or will not accept. Rather, it’s because the “informed consent” that anti-vaccinationists promote should more properly be referred to as “misinformed consent.” At every turn the anti-vaccine movement promotes pseudoscience, misinformation, and quackery to frighten parents into not vaccinating. After all, all informed consent is based on providing an accurate accounting of the risks and benefits of an intervention being proposed. The anti-vaccine movement and the NVIC downplay the potential benefits with frequent propaganda claiming that, for example, flu vaccines don’t work. More importantly, they hype the risks of vaccination to make them seem orders of magnitude more severe than science does, and if they can’t come up with a real potential complication, they make one up! After study upon study failing to find an association between vaccines and autism, they still promote the idea that vaccines cause autism. Heck, the head of Generation Rescue, J.B. Handley, was doing it just the other day!

In fact, if there’s one thing I’ve learned over the years, it’s that the idea behind the “informed consent” argument is not real informed consent. Rather, anti-vaccinationists hide behind the term to provide a set of information to parents consisting of cherry picked studies, misinformation, and pseudoscience that so completely demonizes vaccines and denies their benefits that the only rational response to such information, if the information is accepted as valid, would be to refuse vaccines. Because most parents don’t have the scientific background to recognize the misinformation promoted by the anti-vaccine movement, many parents do tend to accept the propaganda as accurate–or at least as sufficient to sow fear and doubt in their minds about vaccines. This is what I meant by “misinformed consent.” Couple the technique of promoting misinformed consent to an appeal to the idea that refusing vaccines is akin to freedom, and that combination produces a powerful appeal, particularly here in the U.S., where appeals to “health freedom” can be mixed into libertarian “get the government off my back” politics. Mercola and Fisher explicitly tap into that sort of sentiment in announcing the NVIC program:

“The national forced vaccination lobby is well organized and they have billions of taxpayer dollars plus billions more from Big Pharma at their disposal to persuade state legislators to approve more and more vaccine mandates,” said Dr. Mercola, “That is why I am partnering with NVIC and encouraging everyone to join with us and take action now to protect vaccine exemptions in all states.”

NVIC co-founder and president, Barbara Loe Fisher, said “Dr. Mercola and I know it is time to get serous about legally defending the human right to informed consent to medical risk-taking in America. Everyone who registers for NVIC’s Advocacy Portal will learn how to work in their own state for the legal right to make voluntary vaccine choices for themselves and their children.”

Note the “framing,” if you’ll excuse the term. To Fisher and Mercola, public health officials aren’t referred to as public health officials. That’s way too neutral a term. Rather, they’re the “forced vaccination lobby.” Even worse than that, they aren’t just the “forced vaccination lobby” out to steal your freedom away; they’re the “forced vaccination lobby” funded by an unholy cabal made up of the government and big pharma. Similarly, to Fisher and Mercola, undergoing vaccination to prevent disease is not, as science tells us, a high benefit/very low risk medical procedure. Oh, no. To Fisher and Mercola, it’s “medical risk-taking,” as though vaccinating were some sort of game of Russian Roulette. This is what I mean by “misinformed” consent, and Fisher’s been playing the game of representing her anti-vaccine views as “pro-freedom” for a very long time. She’s been quite good at rebranding the NVIC to be seen not as the crank organization that it is, but rather as a “vaccine safety watchdog.” This framing allows the NVIC to represent its portal as a “one stop shop for vaccine choice advocates”:

“The religious and conscientious/philosophical belief exemptions to vaccination are being targeted for elimination by drug company lobbyists and doctors and organizations with financial ties to vaccine manufacturers,” said Dawn. “We wanted to create a one-stop shop for informing people in real time about what is going on with vaccine laws and policymaking in their states to help level the playing field. Now concerned families can make their voices heard and be represented in their own state legislatures.”

Dawn emphasized that the NVIC Advocacy Portal, which took more than a year to develop, is still “a work in progress.” “Even though the NVIC Advocacy Portal is in its infancy, we knew we needed to launch it now to give people a way to take immediate action,” she said.

What does this portal offer anti-vaccine activists? A fair amount of stuff, including contact information for legislators, instructions for how to try to persuade legislators to expand vaccine exemptions, online training sessions on “vaccine choice” advocacy, a rapid response system that alerts anti-vaccine activists to legislation that the NVIC wants them to oppose or support, message boards, and online newsletters. Come to think of it, I’m half tempted to join the NVIC Advocacy Portal in order to keep tabs on them. And so I would have if they didn’t ask for my address. On the other hand, I’ve been meaning to get a post office box for a long time.

Still not convinced that this whole project is anti-vaccine, not pro-freedom or pro-safe vaccine? Check out this flourish at the end:

“Barbara and I know that freedom is not free,” said Dr. Mercola. “We need to organize and raise millions to fight Big Pharma and Corporate Medicine. We must fight the forced vaccination lobby that wants to enslave us and make us buy and use more and more vaccines so drug company stockholders make bigger and bigger profits. I have selected NVIC as one of my favorite charities because I want to win this war against forced vaccination in America.”

Oh, goody. The NVIC and Joe Mercola, two crappy woos that taste crappy together–and endanger our children as well.

It turns out, though, that Barbara Loe Fisher and Joe Mercola aren’t the only anti-vaccine loons getting in on the act. SafeMinds has apparently decided to break out a new anti-vaccine propaganda effort to persuade people not to be vaccinated against influenza this year. As Autism News Beat points out, now that the election is over, vaccine rejectionists are calling for a “fresh start” in persuading legislators to pass antivax-friendly laws. Besides having produced a new brochure and trying to get its followers to contact their legislators, SafeMinds is trying to raise money to show this video (among others) in movie theaters during the holiday season:

Note the intentionally inflammatory juxtaposition of images of pregnant women with toxic waste dumps, the implication being that injecting pregnant women with the flu vaccine is the equivalent to injecting them with toxic waste. SafeMinds makes a big deal over a claim that thimerosal can’t be disposed of in a landfill. Actually, lots of drugs and medical waste can’t be disposed of in a landfill either. There are special landfills for them. The utter intellectual dishonesty and sheer, neuron-apoptosing stupidity behind these images makes baby Jesus weep. Sure, they say in the ad dthat they only want to tell you “not to take the risk” and to demand “mercury-free” vaccines, but in reality, this is of a piece with SafeMinds’ general anti-vaccine stance. This is made plain in a followup video SafeMinds released the other day. If the first video was the media-friendly mild plea, this one goes full-on conspiracy-mongering anti-vax crazy:

Let’s see. Voice of doom narrator? Check. Montage of mainstream media and blogs arguing against SafeMinds as though in a conspiracy? Check. The narrator intones ominously, “Listen to mainstream science and the media, and you might think the vaccine-autism debate is over and done with. The ‘vaccines don’t cause autism’ drumbeat is steady.”

Why, yes. Yes it is. From a scientific standpoint, the vaccine-autism “debate” (in reality a manufactroversy or pseudodebate) is over and done with. It has been for a long time. In fact, even though I’ve criticized her for being a little careless with her facts from time to time, I really liked one of the clips in the video featuring Dr. Nancy Snyderman. In it Dr. Snyderman repeatedly and aggressively slapped down the annoying Matt Lauer when he kept referring to the vaccine-autism link as “controversial,” telling him (quite correctly) it is not controversial–because it isn’t controversial among scientists and physicians. As I’m wont to say from time to time, from a scientific standpoint, the vaccine-autism hypothesis is pining for the fjords. It’s passed on! This hypothesis is no more! It has ceased to be! It’s expired and gone to meet its maker! It’s a stiff! Bereft of life, it rests in peace! (Except that it doesn’t; it’s a zombie that keeps rising from the dead.) Its metabolic processes are now history! It’s kicked the bucket, it’s shuffled off its mortal coil, run down the curtain and joined the bleedin’ choir invisible!!

It is an ex-hypothesis, and, yes, I do so love Monty Python’s Dead Parrot Sketch.

The room temperature nature and lack of scientific metabolic activity of the vaccine-autism hypothesis don’t stop Bernadine Healy, though. How predictable. Ever since Bernadine Healy went over to the dark side in order to become Age of Autism’s Person of the Year for 2008 for her increasing flirtation with the anti-vaccine movement, she’s become the go-to woman for anti-vaccine crankery. I’ve discussed Healy on more than one occasion here; I don’t feel an obligation to discuss her again other than to point out that she’s become a hack of late. But because she was the Director of the NIH back in the 1990s, she’s the best friends anti-vaccine loons could ever have because she grants them the patina of scientific respectability. In fact, she’s the first person shown after the voice of doom intones that “not all scientists agree.” Just as creationists and global warming denialists trot out scientists with no experience or training in evolution or climate science to attack the scientific consensus, SafeMinds trots out Bernadine Healy when the need arises, as it apparently did here. Elsewhere, it’ll trot out Boyd Haley and other scientists from unrelated disciplines.

While viewing this video, like Autism News Beat, I felt as though I were taking a trip down memory lane to peruse the anti-vaccine movement’s greatest hits. It’s all there, the rebranding of autism as a mitochondrial disease in the Hannah Poling case, the Bailey Banks case, claims that the government has compensated children for vaccine-induced autism, and a number of anti-vaccine tropes. Given that Autism News Beat has refuted each of the points in the SafeMinds video, I’ll refer you there. The video concludes with the voice of doom intoning, “So, as you see, vaccines don’t cause autism, except for when they do.” Bravo for the pure propaganda.

That SafeMinds even had to do this video is rather telling. Five years ago, which is when I got involved in refuting the lies of the anti-vaccine movement in a big way, news coverage of the vaccine-autism manufactroversy was nearly always credulous, giving far more credence to the proposed link than the science would indicate. SafeMinds and other anti-vaccine groups were given prominent coverage; even J.B Handley appeared regularly on TV and radio. Over the last year or two, I’ve noticed a welcome new trend in that the media is actually starting to demonstrate a bit of skepticism and, far more often than I can recall, getting the story right. Most likely this is because of outbreaks of vaccine-preventable diseases in populations with low vaccine uptake coupled with a continual drumbeat of scientific studies that have asked the question whether vaccines are associated with an increased risk of autism and come up with a resounding “No!” as the answer.

Even so, the question remains: How do we combat the problem of anti-vaccine propaganda. I came across an possibly depressing example of how badly we do it from Jason Goldman, who in a post entitled Vaccination, Confirmation Bias, and Knowing Your Audience described an event at GlaxoSmithKline’s headquarters about vaccination:

For a corporation that depends on communicating science to the public, they did a terrible job of it! For a certified card-carrying data-whore like myself, the Powerpoint presentations (which broke every. single. rule. of effective presentations. I highly recommend that they hire my friend Les Posen to teach them how to present properly) did not have enough detail. They would present some statistic, but without the level of detail required for me to make any real sense of the data. I will grant that I was not the intended audience of the talk, so I will forgive them their lack of error bars and missing p-values. For a general audience without a scientific data-driven background, the presentation was even more useless! It was all statistics, bar graphs, and numbers. If you’re going to communicate science to a general audience (and I’d like to think that I know a thing or two about communicating science to a general audience), you need to engage them emotionally. You need to tell a story, not drown them in statistics. The presenter might say something like, “Last year, three gazillion people died because they were not vaccinated against a Terrible Disease That Kills People In Gruesome Ways But Which We Could Eradicate In Less Than A Decade If Everyone Would Just Get Vaccinated.” Everyone would agree that this is a Bad Thing, at least. More likely, it is a Terrible, Horrible, No Good, Very Bad Thing.

[…]

Giving us incidence and death rates and other such statistics doesn’t really get the job done. It doesn’t communicate what they want it to. Nor will glossy pamphlets (like the one they gave me) featuring Mia Hamm telling us to get vaccinated. What will get the job done is story-telling, appealing to emotion, and utilizing accessible analogies. Instead of telling us how many gazillions died last year, tell us how many airplanes full of people, or how many football stadiums full of people died last year.

The GSK corporate blog also provides an account of the visit, as do Nutgraf and Scrutiny by the Masses. Nutgraf emphasizes the technical aspect of vaccine production, in particular the absolute cleanliness required as does Mom to the Screaming Masses. Apparently last year GSK arranged a similar program.

As I thought about the NVIC initiative and the SafeMinds video propaganda program, these efforts by GSK seemed completely ineffectual for the very reasons that Jason outlined, but more than that. First of all, you have to consider the messenger. To anti-vaccine parents, pharmaceutical companies like GSK are Satan incarnate. No matter how much a company like GSK tries, it’s unlikely to be trusted because, in the view of the anti-vaccine movement, it’s only in it for the money and it’s the entity that caused their children’s autism. I understand why GSK might have wanted to try anyway, but in reality it is the worst possible messenger, no matter how good it is at PR (and apparently it wasn’t that good). Put a sympathetic mother up against a pharmaceutical company for PR purposes, and the pharmaceutical company will lose every time. Worse, bloggers who accept trips like this risk being painted as in the thrall of big pharma.

Yet, at the same time, I really don’t like Jason’s solution, either. I understand that appealing to emotions is important, but matching the anti-vaccine movement story for story is a game that scientists are likely to lose at. We are constrained by the facts; the anti-vaccine movement is not. We feel vaguely dirtied by using manipulative stories the same way the anti-vaccine movement; that is to our credit. Yet, there’s no denying that such methods can be extremely effective. There has to be a mix that provides the human impact, the emotional hook, necessary to combat the blatant emotionality of the anti-vaccine movement, but without betraying scientific accuracy. I just don’t know what that balance is. I wish I did, but I don’t.

So in the meantime, I soldier on in my own little way, hoping that my efforts have an effect.