There's even a Jenny McCarthy Body Count. (Former playmate Jenny McCarthy is the most prominent of the anti-vaccine advocates).
So why is the anti-vaccine movement still strong? Oprah has notably given Jenny McCarthy a highly visible platform. Despite overwhelming evidence that vaccines don't cause autism, one in four Americans still think they do. This has led to upsurges in measles, mumps and whooping cough among other easily preventable diseases. Large numbers of unvaccinated kids are dropping the population immunity below the herd immunity threshold for many diseases.
A great article investigating this tragedy is now available at PLoS Biology.
As the article points out, there is a conflict between individual interests and community interests. Pediatrician Jeffrey Baker says that "parents who claim nonmedical exemptions seem to become so focused on their own children that they “lose the bigger picture,” not accepting responsibility for the impacts their actions may have on the health of the community."
Autism's False Prophet's author Paul Offit blames "the media for keeping the myth alive by following the journalistic mantra of ‘balance,’ perpetually presenting two sides of an issue even when only one side is supported by the science. And shows like “Larry King Live” have been “just awful on this issue,” he adds, placing ratings and controversy above public health by repeatedly giving McCarthy and other “true believers” a platform to peddle fear and misinformation."
Medical anthropologist Sharon Kauffman thinks that the easy access to information online has exacerbated the crisis. Kaufman says, “many parents see even the most respected vaccine experts' perspective on the issue as just one more opinion.”
Article author Liza Gross writes, "Scientists on TV and radio are hard-pressed to compete with the emotional appeals of activists....McCarthy emerged as a hero for some parents by telling her story. Personal stories resonate most with those who see trust in experts as a risk in itself—a possibility whenever people must grapple with science-based decisions that affect them, whether they're asked to make sacrifices to help curb global warming or vaccinate their kids for public health. Researchers might consider taking a page out of the hero's handbook by embracing the power of stories—that is, adding a bit of drama—to show that even though scientists can't say just what causes autism or how to prevent it, the evidence tells us not to blame vaccines. As news of epidemics spreads along with newly unfettered infectious diseases, those clinging to doubt about vaccines may come to realize that several potentially deadly diseases are just a plane ride, or playground, away—and that vaccines really do save lives.
"Embracing the power of stories" sounds like framing to me. The notion was abhorrent to me when I first read the Nisbit and Mooney article, but lately I've been feeling less certain regarding the role of scientists in their intersection with the media. The truth is a narrative; we construct plausible models of the world around us through metaphor and heuristics. Scientists and laypeople grasp different touchstones when responding to issues. The autism affair is a clear example of how scientists have failed to make their point.
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The notion was abhorrent to me when I first read the Nisbit and Mooney article, but lately I've been feeling less certain regarding the role of scientists in their intersection with the media.
Go with your first instinct. It's tempting to emulate successful strategies of people using marketing and spin to achieve a short-term cultural goal but framing did a lot in the mid '90s to damage the credibility of scientists and make science positions into political footballs. Staying within your Star Wars-ish-ness, "Fear is the path to the dark side."
The whole Darwinius masillae raised the issue for me again. The whole episode was so over the top and overhyped, it made me blush. But then again, I thought, maybe a few more headlines stating DARWIN PROVED RIGHT! MISSING LINK FOUND! might sway a few fence-sitters.
That's not right. People expecting great revelations will feel cheated by findings of lesser import, thus damaging the credibility of science as a whole.
Science is an understated discipline. Although the message is often drowned out by the pandemonium of the crowds, getting it right must count for something. I am reminded of the old commercial "When E. F. Hutton talks, people listen..." Even if a scientists' message is the equivalent of a whisper, their respectibility SHOULD ensure that people pay attention.
What accounts for the relationship between vaccines & autism? The 2 *are* related to each other, it's just not clear if the relationship is social (eg, in people's heads) or physiological.
The lack of a significant relationship between 2 variables is less interpretable - borderline uninterpretable - in comparison to the discovery of a relationship. This is basic hypothesis-testing - when you find that 2 variables are related, your hypothesis was supported; when you fail to find a relationship, you fail to support your hypothesis - you don't support the converse of your hypothesis.
The implications of this logic are that you can't make inferences from negative explanations. Which is to say that failing to find a physiological relationship between autism & vaccines doesn't mean that the relationship is automatically social. It doesn't even mean that the relationship is *not* physiological. It just means that you failed to find the specific physiological relationship that you were looking for.
My concern is that the failure to find a physiological relationship between autism & vaccines has not helped us explain the relationship between autism & vaccines - even if you believe that the relationship is just in people's heads, call it the social relationship.
Sympathetic dr's tend to informally spout non-scientific explanations of the social relationship as to not sound cold to these parents. I've heard 2 overlapping versions: One is that parents of autistic children have been through a "traumatic"-like experience, they're looking for some sort of explanation, so they make this false connection, as vaccines are given at the age that autism starts. The second is that a few parents stumbled across this spurious inference & it just snowballed from there through the media/internet.
If you really examine these explanations, they have very little explanatory power: Parents go through all sorts of traumas. And kids have all sorts of experiences and all sorts of medical tests/procedures, both at the age at which autism generally starts, and at the age at which other conditions - some on the rise like autism - start. If the trauma-explanation were true, then why don't we see parents making these inferences for other conditions? Or why haven't vaccines or other medical common procedures been linked to other conditions?
The snowball explanation also lacks any degree of specificity. Across the whole population, the public is constantly making false inferences, some get picked up by the media, some go on to spread for a bit, but usually for a matter of months, not years. These sorts of things are fad-like, & they usually die down when they don't resonate with authorities and/or the general public.
Of course, you can still speculate from these 2 premises, arguing that they fed back into each other in a very unique way which has made this single specific "myth" so strong that it's been almost impossible to extinguish, and indeed further attempts to disprove it have only made it spread more. That's a possibility - a "positive", not negative, explanation. But it seems unlikely. If it were true, then it would engage the likes of psychologists & sociologists as a truly unique & amazing phenomena.
It's more likely - I strongly suspect - that there is a genuine medical relationship between autism & vaccines, & science just isn't smart or sophisticated enough to have discovered it. Freud afterall made this same inferential mistake - reasoning from a negative relationship - when he said that somatic symptoms that are unexplainable by medicine *must* then be psychological. Turns out it was probably just MS. Ascribing the autism/vaccine relationship to trauma/random spread of social memes is eerily similar.
Anyway, sorry for such a long comment, but I'm quite curious about this, as I haven't seen an adequate response.
After all, it isn't simply as if people are casually making the connection between autism and vaccines, but they are being lead to that conclusion by many others that have an agenda. As a result, this becomes a self-sustaining group that bolsters its viewpoints with more and more contrary views until it reads like a UFO convention.
Bear in mind that the autism/vaccine debate isn't questioning the information, it is creating a conspiracy theory which suggests that there are powers that are trying to "cover up" or protect vested interests. If this latter claim is demonstrably false, then what of the rest of the claims? Do they really fall under the purview of scientific investigation?
Great point, I never thought of it like a conspiracy, and I think that perspective might shed some light on what we're seeing.
The autism/vaccine link certainly has some conspiracy-like features. At the same time, does it act like a conspiracy? Does it look & smell like one? I'm not sure.
I've met my share of bona-fide conspiracy theorists. If you're ever in Los Alamos New Mexico there's this junk yard/shop with used equipment from the national labs there. If you engage the owners - 2 kind old men who used to work in the lab - they'll talk your head off about one conspiracy after another. It's really fascinating b/c you can tell that they're super-smart, they're referring to legit principles of physics, & one has intimate encyclopedic knowledge of the different types of US warheads. But the bottom line is that they're just outright delusional. You can see it in every aspect of their character. They have a delusional personality, along with the features that tend to correlate with it.
The autism/vaccine link is not in the same vein. Unlike other conspiracies, it has not spread in conjunction with a random bag of other miscellaneous conspiracies (the latter might look like every other week they say that vaccines cause all sorts of other unrelated conditions). Furthermore, it's not of the delusional sort. It's being purported by soccer moms & mainstream figures. Since most of the parents' children developed autism, it would have to be a considered a sort of acquired delusion set off by a precipitating event rather than by a psychological/personality feature. And parents have intimate knowledge of how their children behave, it's not perfect, but it rivals modern medicine, built into them over evolution; calling their intuitive causal conclusions about one event precipitating another a social conspiracy is not the simplest explanation.
If it's analogous to any modern phenomena, it maybe to medical misinformation spreading swiftly over the internet. But this "snowball" explanation still lacks specificity. Bad info spread over the net is random noise that only catches on by chance or because of the way that it fits into the human cognition. Yet why haven't analogous explanations arisen in this manner? If every other week we heard about such rumored associations being spread over the net - one week vaccines cause x, then y, then a causes b - & even if they somehow caught the heart of a celebrity - then the public would quickly become weary. It would be a new social phenomena - fascinating in & of itself - like viral videos, but for spurious medical associations. But that's not the case.
Generally when trauma occurs, or something shakes that worldview it creates a situation where the individual becomes extremely suggestible regarding possible solutions to what has them upset. As a result, information may be introduced that appears to have a certain internal consistency, so the individual's accepting this information believe it represents a legitimate source (unlike your conspiracy theorist example).
This is exacerbated by the autism websites because of their authoritarian stance, it makes it look like there are all these legitimate scientific authorities that are questioning the autism/vaccine link and consequently it reaffirms to the parent (within their struggling belief system), that there is something afoot that should make them cautious and skeptical.
At this point, the more resistance they experience in trying to express their opinion, then the more convinced they become that there is a conspiracy of sorts occurring and the whole thing becomes a feedback loop.
Anyway .... that's something to consider as to why it has the appearance that it does.
Also, the development of autism, although a traumatic-like experience, is at best on the border of what you'd consider 'trauma'. It shares some aspects of a traumatic experience - such as the emotional salience & the sense of loss - but ultimately it doesn't have the same consequences (ie, PTSD, or even mild PTSD-like symptoms). Based on this, you could say that it's differences between a traditional trauma are what cause different consequences (ie, this spurious inference phenomena). But here we're on thin ice, b/c it's borrowing from the construct of trauma, and altering it slightly/adding something new, to have it apply to something it doesn't traditionally cover.
This isn't so much in response to you Gerhard, it's on the dr's who are literally reaching as far as they can for any non-medical explanation, to the point where they've offhandedly redefined the word "trauma". If they seriously thought that (a) having a kid develop autism was a traumatic experience and (b) it put parents at risk for making these poor inferences about medical science, then they'd have to explain how this fits into the construct of trauma & it's consequences, an area which is rather well-defined and heavily studied.
Not to be overly provocative, but calling this a traumatic experience is almost analogous to overusing the "rape" - it is a stretch of the scientific/literal definition of the word, & to a degree it belittles people who actually suffer trauma.
Simply the fact that doctors are reaching towards these distant explanations is suspect in & of itself, and they are explanations that do not stand much scrutiny. It is certainly possible that the relationship between the 2 medical variables autism & vaccines is of non-medical origin. But that would be rather counter-intuitive. And until proven as such - or given a solid explanation - it should be assumed that the relationship is medical & it hasn't been found yet.
Well you've brought another very significant point .... the doctors. In most people's minds they don't separate doctors from scientists which gives rise to a whole other set of problems. As a result, they are reluctant to consider the possibility that their doctor's don't know what they're talking about.
I recently commented on a post where I said a person's doctor was an idiot because he proposed a cause for a disease despite the fact that he said he couldn't prove it. Since this simply had the effect of causing alot of undue stress and potential guilt on the part of the mother, it seemed like an incredibly stupid thing for a professional to do.
Whether he is right or not isn't particularly relevant, but to simply toss out unsubstantiated information (especially when it can make no difference) is precisely what gives rise to the phenomenon you're referring to.
Some thoughts:
This is basic hypothesis-testing - when you find that 2 variables are related, your hypothesis was supported; when you fail to find a relationship, you fail to support your hypothesis - you don't support the converse of your hypothesis.
against them. First, you have your null hypothesis (here, vaccines and autism unrelated) and your alternate hypothesis (vaccines cause autism). Then you collect your data, and either reject one hypothesis in favor of the other or, alternatively, the data are insufficient to discriminate between the hypotheses.
Anyway, I suspect the problem with autism is that we don't know what causes it. In fact, we can hardly even define it. Children born with it are ostensibly "normal" initially then show symptoms as they grow
older. It must be a great sense of relief for parents to have a "healthy" baby, but these feelings must give way to anguish when parents realize their child is autistic. I suppose in such cases it is natural to want
answers, something concrete to blame or to avoid. The commonly given response "it's genetics" must be particularly unsatisfying.
It is not surprising that parents responded so strongly when given a concrete cause, especially since the original progenitors of the vaccine-autism hypothesis were in fact scientists. Plenty of
scientists did suspect vaccines, at least initially. However, the process of science is a process of winnowing out unsupportable hypotheses with evidence, and once it became clear that the evidence
did not support a link, most, but not all, scientists jumped off that bandwagon. It is easy to point at these remainders as "heroes" that resisted the special interests of the drug companies.
The temptation to blame big, faceless corporations is a strong one. I am reminded of the HIV/Polio Vaccine controversy. The hypothesis that HIV was introduced to humans during vaccine trials was a very seductive one. Subsequent evidence disproving such links did not have the same emotional "volume", and much like the vaccine-autism refutation, simply did not penetrate the consciousness of many.
The autism-vaccine theory had many strong "evidential" aspects, such the fact that mercury IS used in vaccines, the fact that mercury is toxic (methylmercury actually, not the ethylmercury in vaccines) and the fact that vaccines and autism are often contemporaneous probably gives parents a strong sense that vaccines MUST cause autism despite what the scientists say.
I am certain to be the most pro-business person here but if Merck gets a $5 billion judgment for hurting people and their marketing group immediately starts promoting a new vaccine as life or death for kids to all parents, I don't give a crap who thinks I am a luddite - it needs to be examined critically. The good news about autism and mercury is that the controversy made researchers check every piece of available data again. Now that there is no connection, people need to be made aware. Making fun of concerned parents hasn't helped anyone.
The media are catching on. Newsweek recently took Jenny McCarthy and Oprah to school for promoting hysteria. Making fun of them is certainly a good idea.
Thanks for the comment, it gave me some good food for thought in terms of questioning the validity of the link between autism & vaccines. I particularly liked the analogy to HIV/polio vaccine & the point that since we know so little about autism parents are naturally pining for the cause.
On hypothesis testing, all other things being equal (ie, assuming the null hypothesis) one would suspect that parents of autistic children would be just as likely to blame vaccines as a cause as any other potential cause. I admit this is stretching the logic of hypothesis testing, but what's surprising is that after more than a few years the autism/vaccine movement seems stronger than ever. Assuming the null, over one year they might randomly lean more towards cause a, over the next towards cause b. But if neither cause a nor cause b were truly valid, then they would die off after losing social momentum. That is, a large enough cohort of moms would not see the vaccine link in their children, & they would not support the movement.
Take a step back & look at the internet/media: There are a lot of claims about medical science & just science in general which are bold, stupid, deceiving, & just random. The internet has been blamed for propagating false false medical information; but as savvy consumer's get more used to it, it might be doing just the opposite, by forcing people to be more discerning about what they read. Lots of people might initially fall for a good-for-nothing cure-all, but they can only be fooled so often, as they might warn others with negative reviews. One would suspect that over a good amount of internet usage & time, the nonsensical ideas would drain themselves out, lose momentum, & be replaced by new nonsensical ideas, while the sensible ones would gain steam, albeit with a great deal of variation. The autism/vaccine link has not really died down, while even other proposed causes of autism (eg, toxic lead) have gone away. It's not proof of course, just a grain of suspicion.
It is easy to blame faceless companies, but I just don't see that as playing a role. This is often what you hear: My child got a bunch of vaccines. The next day, I noticed he was less sociable & out-going, & that gradually developed into the symptoms of autism. Mothers are really cued into the behavior of their children, and they just know when something's not right. Their logic isn't perfect, but I find it quite hard not to take it at face-value. Put yourself in their shoes where you're just absolutely convinced that that's what precipitated the onset. If a small yet vocal group of mothers seems to be shouting something absurd, that's one thing. But the autism/vaccine groups seem to have grown much larger.











I would take that as being quite literally true, and I like your use of the term 'plausible'. Mental models are under-researched in my opinion. If we can come to understand how language works, then we can come to understand how our thinking is affected by the multiple colours of language. Perhaps we can then not allow our prejudices to lead us gently by the hand and push us under a speeding train.