The sociology of the antivaccination movement

I was perusing some journals yesterday, including the most recent issue of Nature, when I came across a rather interesting news/discussion item that began thusly:
Nostradamus we are not, but a safe prediction for 2006 is that initiatives promoting public engagement in science and technology policy-making will proliferate. There will, of course, be devils in the details, and critical assessments will be required. But Nature, having consistently championed public engagement, can nevertheless only welcome its development.

But there are times when no amount of explanation and consultation can counter the resistance of some sectors of the public, often representing a strong current in society, to the most carefully crafted science-based advice. Because the stakes for people's quality of life, economic development and the rights of individuals can be high, governments and the rest of us need to understand how and why such resistance to science develops.
It occurred to me that that same comment could be made about teaching evolution, given the rise of the pseudocientific religious concept disguised as science known as "intelligent design" creationism that various states have been trying to foist on students in the science classroom, a movement that led to a fantastically lucid and pointed rebuttal in the form of a judgment against the Dover Board of Education in Kitzmiller v. Dover. However, in this case, the authors are referring to a recent study of resistance to vaccination in the U.K.:
Studies by social scientists have a major role to play in providing an understanding of how such resistance develops. A notable example is British research led by Melissa Leach at the University of Sussex into strong resistance by parents to their children receiving a freely available vaccination against measles, mumps and rubella (MMR). The relevance of this research extends well beyond the particular circumstances and region studied.
Referenced was a report (a published, peer-reviewed version of which can be found here) examining how resistance to vaccination begins in parents. Not surprisingly, a wide variety of backgrounds and experiences contribute to the development of antivaccination beliefs or overestimation of the dangers of vaccines, particularly how "MMR talk," as the author calls it, either between parents or via antivaccination propaganda being spread via the Internet, as described:
The study of parents’ responses provides a vivid demonstration of how people outside the relevant research communities develop their own knowledge and interpretation of the literature, and how the Internet allows this ‘lay expertise’ to be shared within a climate of shared perceptions of risk (see the unrefereed report MMR Mobilisation: Citizens and Science in a British Vaccine Controversy; www.ids.ac.uk/ids/bookshop/wp/wp247.pdf). For example, one parent, David Thrower, compiled his own review of the literature (www.whale.to/a/thrower04.html), and several websites promptly supplied hostile responses to every government reassurance.

Leach’s research highlights the influences on such resistance. Confounding stereotypes, the parents ranged across the social classes and in many cases displayed a sophisticated understanding of the issues. Surveys of parents on both sides of the debate revealed a significant association of those opposed to MMR with family histories of illness and with an interest in alternative medicines and homeopathy. There was a strong sense of responsibility among mothers ofboth persuasions about decisions over whether to have their children vaccinated, with concerns about the social value of vaccination in terms of herd immunity being given much lower priority.
It's not surprising at all that parents prone to antivaccination beliefs have family histories of illness or an interest in alternative medicine such as homeopathy, as much of "alternative medicine" is hostile to vaccination. It's also quite common for religious beliefs to play a role. However, I would quibble somewhat with whether that apparent "sophisticated" understanding of the issues involved is actually as sophisticated as it appears on the surface. In some cases it may be, but far more often it's a superficial understanding that has little depth, mainly because few lay people have the detailed scientific and medical background to apply the information. It's often a matter of knowing facts, but not having the scientific experience, understanding of mechanisms, or sophistication to put them in context or to apply them to the situation properly, giving the veneer of scientific sophistication. I can't remember how many times that, while "debating" in misc.health.alternative, I would have a study quoted to me as supporting an antivaccination or other alternative medicine viewpoint and find that, when I actually took the trouble to look up the study and download the PDF of the actual article rather than just reading the abstract (which is all most lay people have access to and therefore all they read), I would find a far more nuanced and reasonable point or even that the article didn't support what the altie was saying. One other aspect that often comes into play is an extreme distrust of conventional medicine and/or the government such that few individual studies that question the safety of vaccines are given far more weight in their minds than the many more studies that show vaccines to be extraordinarily safe or large metanalyses (such as those done by the Cochrane Collaboration). Certainly this is one reason why the infamous Wakefield study, despite being shoddily designed and now thoroughly discredited, keeps rearing its ugly head again and again and continues to be cited by antivaccination activists as strong evidence that the MMR vaccine causes autism.

It's not surprising, too, that parents would place more value on whether vaccination benefits their children over the benefits to society through herd immunity. After all, a mother's and father's primary duty is to their own child, not other children. Part of the problem here is likely a matter of vaccination being a victim of its own success. Before, a one or two in a million risk of serious adverse reactions wasn't even blinked at because the diseases vaccines were designed to prevent were common and feared, so much so that it was an no-brainer to consider the risk of vaccination to be acceptable compared to the risk of disease. Now that major vaccine-preventable diseases have been largely controlled or eradicated, the benefit of vaccines in keeping disease at bay is no longer readily apparent in the daily experience of parents, leading to a situation where even the very small risk of serious adverse events from vaccination seems too high for a benefit that that parents cannot see for themselves. Also, parents tend not to understand that their participating in producing a larger pool of unvaccinated children endangers not only other children (both vaccinated and unvaccinated because no vaccine is 100% effective), but their own children, because, as vaccination rates fall, the diseases vaccinated against almost inevitably return.

What all this "MMR talk" and antivaccination agitation leads to is, depending upon the parent, a perceived or real adversarial relationship between antivaccination parents and "conventional" medicine and the government, with in essence an arms war between the medical authorities and the government reassuring people that vaccination is safe and antivaccination zealots trying to refute every reassurance, no matter how sound the science is behind it:
Leach’s work points to a conflict between concerns about MMR based on individual clinical studies versus government reassurances based on epidemiology. Soon after the publication of Leach’s report, a meta-analysis of the literature on MMR by the prestigious Cochrane Collaboration, while highlighting shortcomings in many studies, concluded that there was a lack of evidence to support a link with autism (www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004407/pdf_fs.html).
A visit to one of the websitesopposed to the MMR vaccine(www.jabs.org.uk) reveals a critique of the meta-analysisthat attempts to undermine its reassurance. And so the debate continues. Meanwhile, the uptake of MMR vaccine, which fell significantly, is recovering.
Leach describes it thusly:
The question of debate and dialogue, whether it should take place and what it should be about has been a further recurring theme in the MMR controversy. Mobilising parents frequently claim that they are seeking “open discussion”, and “to be listened to”. And their discussions, whether in local groups, on national organisations’ websites, or in the media, turn frequently on what they see as defensive denial of this by those opposed to thei bodies have invited their representatives to meetings, they have been ignored or delegitimised – for example in the 1997 MRC review (Melanie Philips, Daily Mail, March 2003). They claim that their requests for meetings with senior public health officials and politicians have been shunned, and that the Department of Health has refused to entertain proposals for an independent, off-the-record dialogue and sharing of scientific evidence. They also draw attention to the refusal of pro-MMR government spokespeople and scientists to participate in events that MMR-concerned networks coordinate – such as the televised debate following the Channel 5 docudrama. At the same time, they claim that government spokespeople seek their views covertly, for instance by telephoning JABS pretending to be parents, in order to have inside information with which to undermine them. Those in pro-MMR science-policy networks tend to justify their positions on the grounds that there is nothing to debate; that activists’ claims are spurious and that they have already reached scientific closure on the safety of MMR – the task is just to communicate this to the public. In this context, there have, as a senior Department of Health official put it, been “encounters” between each side in the controversy, but little real dialogue. Frequently taking place through the media and at public events, such encounters have tended to contribute to further polarisation of positions, sharpening further the stand-off and non-closure that has come to characterise the controversy.

The MMR controversy thus rolls on. What began as a parental movement pushing for citizen perspectives and supportive science to be heard and acted upon, has evolved over the last decade into a struggle between two, equally orchestrated campaigns. To understand its dynamics, social movement theories have been helpful. Theories of framing have been important to see how each side constructed and presented its concerns and created discourse coalitions by drawing together elements of previously more separate movements (around autism and around anti-vaccinationism, for instance), and to identify some of the fundamental incompatibilities that have hindered closure to the controversy – such as between parents’ individual-focused, and government’s population-focused, orientations. Theories of social movement identity have been important to see how parents came and remained together, united by common sets of experiences reinforced through everyday movement practices. And political process approaches to social movements, which highlight how framing interacts with movement strategies and the mobilisation of resources (McAdam et al. 2001), have been important to see how, in practice, the campaigns have taken shape and pursued their goals.
Much the same thing can be said about the controversy over thimerosal. Unfortunately, I'm not sure that I see how one proposed solution will help all that much, the creation of a "well-resourced independent national agency that commands the trust of both the government and the public in matters of health protection and is empowered to take responsibility for mediating in such debates." It may help when it comes to many parents who are on the fence. It is they to whom the arguments of antivaccination activists sound most plausible. However, people like J. B. Handley, who asserts dogmatically and with near certainty that "that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning" are not swayed by an increasing preponderance of scientific and epidemiological evidence that autism is not caused by mercury exposure. Consequently, the J.B. Handleys of the world are not going to be swayed by such an "independent" agency. Also, it is hard to see how such an agency could ever be truly independent from the government, thus feeding the conspiracy-mongering tendencies among antivaccination activists. More promising, although at this stage vague, is Leach's conclusion:
Official engagement with detailed lay theories of child health and vulnerability such as we describe, which go well beyond medically recognised contraindications, would also appear essential in developing an effective discourse around vaccination that parents and professionals could share, and that might help to rebuild trust relations around this controversial issue.
Of course, the devil is in the details, and how we go about repairing the broken trust without being dismissive of the concerns of parents who are not zealots (like Generation Rescue), will be the challenge.

Immunoblogging has more.

Comments

  1. > However, I would quibble somewhat with whether that apparent "sophisticated" understanding of the issues involved is actually as sophisticated as it appears on the surface.

    The term you want - though I'm sure you knew it already - is "Cargo Cultism", as coined by Richard Feynman in the following essay:

    http://www.physics.brocku.ca/etc/cargo_cult_science.html

    A cargo cultist is one who understands all the form (surface appearance) but none of the substance (conceptual and logical underpinnings). Because only the former is readily visible, they may not even realise that the latter exists - and thereby conclude that mastery of the form is all it takes to be an expert. A foolish human error, but an understandable one; a failure of insight and imagination more than anything.

    Of course, once the cargo cultist believes they are an expert in the subject, convincing them otherwise becomes incredibly difficult as the usual human vices of anger, vanity and pride kick in. But then I'm sure you knew that too. :)

    Regards

    ReplyDelete
  2. > convincing them otherwise becomes incredibly difficult

    Oops, should've read "may become"; not everyone is closed to second opinions, after all.

    ReplyDelete
  3. I have a question about an anti-vaccination claim that I ran across. The argument was that the immune system would not develop properly in young children if it did not have some "real" diseases to attack. Thus, vaccinations stunt the immune system and should be avoided. I know next to nothing about the topic. Is this even remotely possible?

    ReplyDelete
  4. This comment has been removed by a blog administrator.

    ReplyDelete
  5. Galmlea: I'm not a immunity expert but from my general understanding, while a challenge is important to generating immunity, this is ofset by whether the challenge itself is dangerous. For example, you might develop an immunity to polio by exposure to live virus, but you risk actually getting polio. Or I can give you a vaccine (usually in the form an altered non-disease causing virus or just a part of the virus) that simulates a challenge but prompts your immune system to react. But I'll leave it for the medical experts to correct me. :-)

    If there truly was substantial evidence that the manufacture of a vaccine was actually dangerous, I have some trust that a vaccine would be withheld (note the destruction of flu vaccine last year because the plant making the vaccine could not be certified.)

    Orac: I'm wondering about not the followers of this cultish behavior but rather those who lead. I.e., what bring someone from believing [xyz] to actively attacking its opposite. I suspect some of it is snake oil (through all ages, but more recently witness the rise of Kevin Trudeau), some of it self-aggrandisement, but what else? Thoughts?

    ReplyDelete
  6. OT, but speaking of new age-y pseudo-medicine, did you see this article from today's NYT?

    http://www.nytimes.com/2006/01/12/fashion/thursdaystyles/12INDIGO.html

    ReplyDelete
  7. all autism is is indigo auras

    We new that!

    I guess the indigo

    generation

    is here to

    rescue

    those of us with other aura colors...?

    I bet Indigo children don't get vaccinated...it might keep them from being disruptive.

    feh

    ReplyDelete
  8. Qalmlea, one's immune system is constantly being challenged unless you live in a sterile bubble.

    Ask whoever said that what "real" means. I predict you'll either get a lot of "uh"s or a rehearsed sales pitch.

    ReplyDelete
  9. Qalmlea said: "The argument was that the immune system would not develop properly in young children if it did not have some "real" diseases to attack. Thus, vaccinations stunt the immune system and should be avoided."

    This "theory" falls flat when comes to polio. It seems back in the dirty old days before sewers, water treatment, indoor plumbing and regular bathing the incidence of polio was infrequent, not many epidemics.

    BUT... in the early part of the 19th century polio epidemics started to pop up all over the place, getting worse into the 20th century. Like in New York City, where they tried to control the spead with quaranteens. Didn't work.

    As it turns out, many people get polio without symptoms... and if they got it as a baby there was a higher probability they would not get the most severe effects.

    It turns out increased sanitation delayed folks from being exposed to polio, and therefore they were more affected.

    Freaky!

    You can read all about it in the book _Polio: An American Story_ by Paul Oshinsky.

    To get a better understanding vaccines, including nifty plots showing what happened when vaccines were introduced AND a discussion of risks and side effects... spend an evening reading this nifty document:
    http://www.cdc.gov/nip/publications/pink/def_pink_full.htm

    ReplyDelete
  10. Last year my partner and I did a sign class. For some bizarre reason 90% of the class members have some close personal or work connection with children and adults with autism. As part of our class we covered medical signs.

    I was horrified to find that almost everyone was anti-MMR and some other vaccinations. One of the cited arguments was a 'milder form of measles' called 'slapcheek' which some children who have had MMR still get. The other was "My friend's aunt's brother-in-law's $child had the MMR and X days later he became autistic".

    I tried to explain that "my friend's aunt...." is not scientific and that it is purely anecdotal. That the original paper was flawed, misinterpreted and media-ised... No one wanted to know.

    Sadly the resident medical student wasn't there and I suspect he'd have been too shy to argue.

    Now these misled fools will be passing misinformation into the deaf community who don't need any more confusion about medical/health things.

    ReplyDelete
  11. Anonymous said: One of the cited arguments was a 'milder form of measles' called 'slapcheek' which some children who have had MMR still get.

    Yes, Anonymous, you are correct in thinking this is a straw man arguement. Fifth disease (aka slapcheek because the person's cheeks get very red like they were slapped) can be gotten by children who have had the MMR because it is NOT a milder form of measles but another virus all together (can't remember which one this late at night...) The MMR does not protect against is because the virus is not one of the three that the MMR provokes an immune response to.

    ARGGGGHHHHH!!!!!!!!! So all these people believe that the MMR should prevent all viral syndromes that are similar to measles, mumps, and rubella. This makes me tired, at how gullible some people are.

    Personally, I'm for a few healthy germs. I refuse to have all the antibacterial soaps in my house and when my children were small, they got all their vaccines and if their pacifier fell on the ground I wiped it off and stuck it back in their mouth without boiling it. I have healthy, happy children. Yes, we get the occasional cold, flu, whatever. It helps the immune system identify those bugs that we haven't been exposed to in the past. We cope.

    Madbard raises an interesting point. What DOES make someone go from believing xyz to believing the total opposite without overwhelming evidence? Inquiring minds want to know.....

    ReplyDelete
  12. Dawncnm,

    Fifth disease is caused by parvovirus B19 (see: http://www.cdc.gov/ncidod/diseases/parvovirus/B19.htm).

    I had to laugh, since parvoviruses have a single-stranded DNA genome and measles, mumps (paramyxoviridae) and rubella (togaviridae) have a single-stranded (+) RNA genome. Not very similar.


    Prometheus

    ReplyDelete
  13. Then there are the stories that get passed along. More often than not a form of taking the raw data from VAERS, tweaking it a bit and making it a form of a horror story.

    For instance, in this post:
    http://www.kevinleitch.co.uk/wp/?p=317#comment-5017

    There is the claim that ONE lot of the Hep-B vaccine caused the death of 64 children. I just recently read _The Cutter Incident_, and in my vague recollection that the the havoc caused by the worst lot ever produced was as deadly as that! (though it did cause at least 200 people to be paralyzed).

    Also, if one lot caused that much devastation it would be fairly common knowledge. So I did some checking around, and I could not find out about this horrible incident.

    What I did find was a report on the VAERS system, and how many total deaths there were reported. But for all the deaths that were investigated, only one could be adequately blamed on the vaccine:
    http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5201a1.htm

    That report referenced a report on deaths that had been attributed to the HepB vaccine. This paper is cited all over the anti-vax websites. I found the full paper with a table showing what the babies actually suffered from. Things like congenital heart condition, SIDS (a couple were from co-sleeping with the parent), and other infections:
    http://sids-network.org/experts/poa9078.pdf

    It is interesting how some of these reports are interpreted.

    ReplyDelete
  14. By the way, when I read the last paper titled "Neonatal deaths after hepatitis B vaccine: the vaccine adverse event reporting system, 1991-1998", which showed that several of the deceased infants had co-slept with parents (with one found on the floor next to the sofa!)... I felt very relieved that all three of mine survived.

    I did occasionally sleep with my babies (but mostly used the bassinet that was near our bed).

    ReplyDelete
  15. When my wife was pregnant, I was vaguely aware of the vaccine controversy. I felt obligated to look into the matter so that we could make informed decisions about vaccinations.

    Of course I used the internet, since it's pretty much the only tool available for a layperson like me. I quickly found site after site of misinformation, rants, and scare tactics. I eventually settled on the Institute of Medicine as the best resource for objective information about the issues.

    But, I can attest that the bad information was not exclusively the domain of anti-vaccine sites. There was less hysteria, but there were plenty of personal attacks on Wakefield (okay, maybe he deserves it, but it doesn't really advance the argument), lots of glossing over of vaccine risks (there are some, though rare; we should at least be honest about it), and similar kinds of study misinterpretation/exaggeration, only leaning the other way. Unfortunately any distortion, no matter how slight, has a way of feeding the conspiracy theorists.

    Even though I personally found an institution (the IOM) helpful in sorting this all out, I generally agree with you that some new agency isn't going to solve this problem (and the people who are dearly committed to it, as you point out, are probably unsalvageable). Where trust is to rebuilt, I think, is most likely at the level of individual interactions: the parents and their pediatrician. It is easier to be convinced by a person than by a web page. Pediatricians need to be trained in how to deal with various attitudes toward vaccinations in ways that aren't condescending or dismissive. Maybe this already happens? I only have my personal experience to go by, but our pediatrician was quite "flexible" with vaccines. The one behavior change we made, justified or not, was to have no more than two vaccines at a time, in the hopes that if our daughter did have a reaction, we would have a fighting chance at identifying which vaccine it was. There was probably more emotion than logic behind this, but there you are.

    As for your quibble, I suppose I would quibble with it. Your sample of people from newsgroups is likely skewed toward the fanatics. I bet there are a lot of people like me who try hard to educate themselves about the issue. Whether my understanding is "sophisticated" or not depends on what you're measuring against, I guess. All else being equal, I would tend to believe these researcher's evaluations of people they talked to and you didn't.

    ReplyDelete
  16. Thanks to Dawncnm and promethius for that information on fifth disease... Brilliant!

    Now I'll have to make sure I can explain DNA, RNA and other such delights in BSL.

    ReplyDelete
  17. Generation Rescue is not a bunch of zealots. They just speak the truth to offset the sophistry of the Medical Profession. GR helps children while the medical profession refuses to correct their own negligence. When it comes to autism, the medical profession is an absolute sham.

    ReplyDelete
  18. Prometheus--thanks for adding the name of the virus. I was suffering from work-induced stupidity and couldn't remember for the life of me that it was the parvovirus.

    ReplyDelete
  19. I would have to characterize Generation Rescue as a group of zealots (as opposed to a "bunch") based on their rhetoric, actions and general resistance to any outside information.

    Like most zealots, they have become completely insular. They reject any data that does not conform to their dogma, demonize skeptics, tolerate (if not condone or encourage) abusive and anti-social behavior in their members, idols and supporters, and attempt to suppress sources of information that are contrary to their world view through vandalism, intimidation and harrassment.

    All of this "bad" behavior they justify by saying that they are trying to help parents and "save" children from a "fate worse than death". Much the same thing was said by the Crusaders as they slaughtered non-combatants, women and children during the conquest of Jerusalem in 1099.

    If this isn't zealotry, then what is?


    Prometheus

    ReplyDelete
  20. Agreed, which is why I said it, although I don't believe GR has gone as far as violence. However, the apocalyptic nature of their rhetoric (they view themselves as being in a battle against evil with no shades of gray) suggests to me that it would not take much to move some of them in that direction.

    GR is also quick to attack anyone who voices views that are even mildly contrary to their "mercury causes autism" dogma. There is no room for disagreement, no room for "heresy" against the dogma in their insular world. If you are not with them, then they conclude that you must be against them.

    ReplyDelete
  21. There is a similar tactic at the MotheringDotCommune forums. In their "vaccination" section if anyone attempts to post anything contrary to their set of views... that poster is banned.

    This also occurs in many other forums like "CureZone" and "OtherHealth".

    Apparently their position is so fragile it cannot stand up to debate nor dissent.

    ReplyDelete
  22. The same sort of thing happens at a very prominent pro-"intelligent design" blog, namely Dembski's Uncommon Descent blog. Many have complained about dissenting comments being summarily deleted or comment threads being closed when too much criticism starts up, as well as people being banned for criticizing ID.

    ReplyDelete
  23. You guys are good at knocking GR. GR helps cure autism while the AAP does not. Why don't you address that sad fact? Why won't the medical professionals admit their negligence?

    ReplyDelete
  24. Kevin;
    I'm surprised you gave me a chance to respond rather than just having my thoughts deleted. BTW, I only favor fighting on the hockey rink and I'm too old for that now.
    If you tell me which statement you're referring too, I'll give you an answer.

    ReplyDelete
  25. Kev doesn't control this blog. I do. (As you know, Kev has his own blog.) Unlike, for example, Dembski and the folks to whom he has bequeathed his blog, I generally don't delete comments or ban commenters for simply expressing opinions contrary to mine. I will, however, sometimes do so for insults, threats, what I deem to be excessively repetitive posting on the same topic, and blatant trolling. Oh, and comment spam is always deleted when I become aware of it.

    ReplyDelete

Post a Comment

Popular Posts