The sociology of the antivaccination movement

i-e7a12c3d2598161273c9ed31d61fe694-ClassicInsolence.jpgDrat! Real life has once again interfered with my blogging. Fortunately, there's still a lot of what I consider to be good stuff in the archives of the old blog that has yet to be transferred to the new blog. Today looks like a perfect time to transfer at least a couple more articles from the old blog. This particular article first appeared on January 12, 2006. For those who haven't seen it before, pretend I just wrote it. For those who have, savor its Insolence once again.

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; For example, one parent, David Thrower, compiled his own review of the literature (, 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 of both 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, 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 (…).
A visit to one of the websitesopposed to the MMR vaccine ( 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.


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My kids have the full range of recommended vaccinations, and a couple more besides (e.g. we always get influenza every year).
I had whooping cough when I was three. We had an outbreak because not enough kids were immunised. It was pretty bad in my case. I was very sick for a while. It did some permanent damage; I still have a nasty cough if I'm around smoke. It almost certainly would have killed me, had I not been immunised myself.
But I was, and that's the only reason why I'm still here.
It's actually quite a sobering thought. Vaccination has made polio unknown in the western world for almost 30 years, but there are very few individuals that you can point to and say: polio immunisation saved that person's life.
Anyone else here in the same situation?

By Pseudonym (not verified) on 18 Jan 2007 #permalink

My father had whooping cough when he was a boy. He was sick for a long time as a result. I think this was circa 1935 to 1940. I'm sure it stunted his growth-- other men in his family were several inches taller. This definitely influenced my decision to get my little son all the vaccinations available.

By Melissa G (not verified) on 18 Jan 2007 #permalink

I've never had a disease for which there was a vaccine (though I've had both meningitis and varicella; there weren't vaccines for that at the time, though) but I do trust vaccines enough that I've actually had MMR three times. :-P The first time was because a bunch of kids my age who'd been vaccinated against measles were coming down with it; presuming a bad batch of vaccine, I received the MMR vaccine as a teenager. Then, when pregnant with my first child, I tested negative for rubella antibodies so I got vaccinated a third time. (Evidently the second one hadn't taken.) I tested positive during my last pregnancy, so I guess I don't need it again.

You'd think if MMR caused autism, I'd be a wreck by now....

By Calli Arcale (not verified) on 18 Jan 2007 #permalink

I was looking for you and didn't know your web address, so I typed in and it took me to the Generation Rescue site. ? ! ?

It depends. How much $$$ in kickbacks is good ol' JB getting from the trial lawyers?

Actually, that's a better question for Lyn Redwood, Mark Geier and Andy Wakefield.

By anonimouse (not verified) on 18 Jan 2007 #permalink

Interesting Guardian Article:

The vaccination campaign has saved 500,000 lives a year over 1999 figures.. and to quote:

Measles eradication could conceivably be stymied not by the developing world, but by dissenters in rich countries such as the UK.

Nice to see how concerned about overpopulation the anti-vaxers are..

By Andrew Dodds (not verified) on 19 Jan 2007 #permalink

My local paper ( published an antivaccination letter recently on the opinion page. The writer informed us that gardasil, the new vaccine against HPV, uses an aluminum adjuvant, which can hurt your brain; 60% of the subjects in the study of gardasil had adverse reactions (this is just plain BS), and not that many women die of cervical cancer each year in the U.S. (3,700 is the number, ~ 1% of cancer deaths), so why bother to vaccinate? The letter was a string of errors and misinformation. It's hard to know where to begin with these people.

"Imagine your child and twenty of his classmates dying of a contagious disease over the next few weeks. Imagine your baby coughing its way to a swift death with nothing able to prevent it. Imagine your body covered in scars, or worse, in evil pustules. Imagine your outrage when the Govt. refuses to develop preventative measures."

"Actually, don't imagine the last one, because it was YOU who demanded that they did not."

By Justin Moretti (not verified) on 23 Jan 2007 #permalink

"Imagine your child and twenty of his classmates dying of a contagious disease over the next few weeks. Imagine your baby coughing its way to a swift death with nothing able to prevent it. Imagine your body covered in scars, or worse, in evil pustules. Imagine your outrage when the Govt. refuses to develop preventative measures."

"Actually, don't imagine the last one, because it was YOU who demanded that they did not."

Nice scare tactics. Sad that this is all you have.

By Common Sense (not verified) on 23 Jan 2007 #permalink

Nice scare tactics. Sad that this is all you have.

That and decades of science that proves that vaccines are safe, effective and have saved countless numbers of lives.

What do you have again? A bunch of b.s. studies and a cadre of scientists who are liars, on the take, or both?

By anonimouse (not verified) on 23 Jan 2007 #permalink

So I've been watching all these ads on TV telling people to find out about GARDASIL. And then I read that Merck was lobbying for this vaccine to become mandatory. Then I saw that the Texas governor is making this vaccine mandatory in Texas for preteens. So I finally decided to look into it.

Here's the scoop:

1) GARDASIL is a vaccine for 4 strains of the human papillomavirus (HPV), two strains that are strongly associated (and probably cause) genital warts and two strains that are typically associated (and may cause) cervical cancer. About 90% of people with genital warts show exposure to one of the two HPV strains strongly suspected to cause genital warts. About 70% of women with cervical cancer show exposure to one of the other two HPV strains that the vaccine is designed to confer resistance to.

2) HPV is a sexually communicable (not an infectious) virus. When you consider all strains of HPV, over 70% of sexually active males and females have been exposed. A condom helps a lot (70% less likely to get it), but has not been shown to stop transmission in all cases (only one study of 82 college girls who self-reported about condom use has been done). For the vast majority of women, exposure to HPV strains (even the four "bad ones" protected for in GARDASIL) results in no known health complications of any kind.

3) Cervical cancer is not a deadly nor prevalent cancer in the US or any other first world nation. Cervical cancer rates have declined sharply over the last 30 years and are still declining. Cervical cancer accounts for less than 1% of of all female cancer cases and deaths in the US. Cervical cancer is typically very treatable and the prognosis for a healthy outcome is good. The typical exceptions to this case are old women, women who are already unhealthy and women who don't get pap smears until after the cancer has existed for many years.

4) Merck's clinical studies for GARDASIL were problematic in several ways. Only 20,541 women were used (half got the "placebo") and their health was followed up for only four years at maximum and typically 1-3 years only. More critically, only 1,121 of these subjects were less than 16. The younger subjects were only followed up for a maximum of 18 months. Furthermore, less than 10% of these subjects received true placebo injections. The others were given injections containing an aluminum salt adjuvant (vaccine enhancer) that is also a component of GARDASIL. This is scientifically preposterous, especially when you consider that similar alum adjuvants are suspected to be responsible for Gulf War disease and other possible vaccination related complications.

5) Both the "placebo" groups and the vaccination groups reported a myriad of short term and medium term health problems over the course of their evaluations. The majority of both groups reported minor health complications near the injection site or near the time of the injection. Among the vaccination group, reports of such complications were slightly higher. The small sample that was given a real placebo reported far fewer complications -- as in less than half. Furthermore, most if not all longer term complications were written off as not being potentially vaccine caused for all subjects.

6) Because the pool of subjects were so small and the rates of cervical cancer are so low, NOT A SINGLE CONTROL SUBJECT ACTUALLY CONTRACTED CERVICAL CANCER IN ANY WAY, SHAPE OR FORM -- MUCH LESS DIED OF IT. Instead, this vaccine's supposed efficacy is based on the fact that the vaccinated group ended up with far fewer cases (5 vs. about 200) of genital warts and "precancerous lesions" (dysplasias) than the alum injected "control" subjects.

7) Because the tests included just four years of follow up at most, the long term effects and efficacy of this vaccine are completely unknown for anyone. All but the shortest term effects are completely unknown for little girls. Considering the tiny size of youngster study, the data about the shortest terms side effects for girls are also dubious.

8) GARDASIL is the most expensive vaccine ever marketed. It requires three vaccinations at $120 a pop for a total price tag of $360. It is expected to be Merck's biggest cash cow of this and the next decade.

These are simply the facts of the situation as presented by Merck and the FDA. This vaccine was just approved in June, 2006. It was never tested on pre-teens except in a tiny trial run with at most 18 months of follow up. Even if we subscribe to the theory that HPV causes cervical cancer, there is ZERO hard data showing that this vaccine reduces cervical cancer rates or cervical cancer mortality rates, which are both already very low in the US and getting lower every year. Now Texas has already made this vaccine mandatory for middle school with all sorts of useful idiots and Big Pharma operatives clamoring for more states to make this vaccine COMPULSORY immediately.

Has everyone gotten the picture or should I continue?

No, please continue.

I wish to hear more about how people have sex deserve cancer and that since its less the 1% infection rate we totally shoudn't care.


Did you crib your post from the Anti-Vaccine Talking Points website or something?

Good gravy.

By anonimouse (not verified) on 03 Feb 2007 #permalink

In medical cost vs. benefit modeling (which strongly informs national medical public policy making and far too strongly informs the medical policies of HMOs), the most critical component is a value called "cost per life year gained."

If the cost per life year gained is under $50,000, that is generally considered a decent investment by US medical policy makers. If "cost per life year" gained is over $100,000, that is generally considered a wasteful medical policy because that money could surely be put to much better use elsewhere. Yes, this is cruel and heartless to some degree, but wide scale medical cost allocations do need to be made and, more relevantly, are continually made using these cost plus risk vs. benefit analyses. Think HMOs. Now consider why pap smears, blood tests and urine tests aren't recommended every month for everyone. Testing monthly could definitely save more than a few lives, and there is no measurable associated medical risk. But the cost would be astronomical versus the benefit over the entire US population when comparing these monthly tests to other therapies, procedures and medicines.

Now on to GARDASIL. By the time you pay doctors a small fee to inventory and deliver GARDASIL in three doses, you are talking about paying about $500 for this vaccine. And because even in the best case scenario GARDASIL can confer protection against only 70% of cervical cancer cases, GARDASIL cannot ever obsolete the HPV screening test that today is a major component of most US women's annually recommended pap smears. These tests screen for 36 nasty strains of HPV, while GARDASIL confers protection against just four strains of HPV.

Now let's consider GARDASIL's best case scenario at the moment -- about $500 per vaccine, 100% lifetime protection against all four HPV strains (we currently have no evidence for any protection over five years), and no risk of any medical complications for any subset of the population (Merck's GARADSIL studies were too small and short to make this determination for adults, these studies used potentially dangerous alum injections as their "placebo control" and GARDASIL was hardly even tested on little kids). Now, using these best case scenario assumptions for GARDASIL, let's compare the projected situation of a woman who gets a yearly HPV screening test starting at age 18 to a woman who gets a yearly HPV screening test starting at age 18 plus the three GARDASIL injections at age 11 to 12. Even if you include all of the potential medical cost savings from the projected reduction in genital wart and HPV dysplasia removal procedures and expensive cervical cancer procedures, medicines and therapies plus all of the indirect medical costs associated with all these ailments and net all of these savings against GARDASIL's costs, the best case numbers for these analyses come out to well over $200,000 per life year gained -- no matter how far the hopeful pro-GARDASIL assumptions that underpin these projections are tweaked in GARDASIL's favor.

Several studies have been done, and they have been published in several prestigious medical journals:

None of these studies even so much as consider a strategy of GARDASIL plus a regimen of annual HPV screenings starting at age 18 to be worth mentioning (except to note how ridiculously expensive this would be compared to other currently recommended life extending procedures, medicines and therapies) because the cost per life year gained is simply far too high. What these studies instead show is that a regimen of GARDASIL plus delayed (to age 21, 22, 23, 25 or 27) biennial or triennial HPV screening tests may -- depending on what hopeful assumptions about GARDASIL's long term efficacy and risks are used -- hopefully result in a modest cost per life year savings compared to annual HPV screening tests starting at age 18.

If you don't believe me about this, just ask any responsible OB-GYN or medical model expert. Now, why do I think all of this is problematic?

1) Nobody is coming clean (except to the small segment of the US population that understands medical modeling) that the push for widespread mandatory HPV vaccination is based on assuming that we can use the partial protection against cervical cancer that these vaccines hopefully confer for hopefully a long, long time period to back off from recommending annual HPV screening tests starting at age 18 -- in order to save money, not lives.

2) Even in the best case scenario, the net effect is to give billions in tax dollars to Merck so HMOs and PPOs can save billions on HPV screening tests in the future.

3) These studies don't consider any potential costs associated with any potential GARDASIL risks. Even the slightest direct or indirect medical costs associated with any potential GARDASIL risks increase the cost per life year gained TREMENDOUSLY and can even easily change the entire analysis to cost per life year lost. Remember that unlike most medicines and therapies, vaccines are administered to a huge number of otherwise healthy people -- and, at least in this case, 99.99% of whom would never contract cervical cancer even without its protection.

4) These studies don't take in account the fact that better and more regular HPV screening tests have reduced the US cervical cancer rate by about 25% a decade over the last three decades and that there is no reason to believe that this trend would not continue in the future, especially if we used a small portion of the money we are planning on spending on GARDASIL to promote free annual HPV screening tests for all low income uninsured US women.

5) The studies assume that any constant cervical cancer death rate (rather than the downward trending cervical cancer death rate we have today) that results in a reduced cost per life year gained equates to sound medical public policy.

As I said before, if any of you don't believe me about this, please simply ask your OB-GYN how the $500 cost of GARDASIL can be justified on a cost per life year gained basis if we don't delay the onset of HPV screening tests and back off from annual HPV screening tests to biennial or triennial HPV screening tests.

The recommendations are already in:

The USPSTF strongly recommends ... beginning screening within 3 years of onset of sexual activity or age 21 (whichever comes first) and screening at least every 3 years ...

And this relates to MMR exactly how?

I agree, mhatrw, in that at this point the cost-per-life saved of Gardasil doesn't warrant it being a mandated vaccine. You can add the fact that forcing already cash-strapped public health agencies to fork over hundreds of dollars a dose means that money for proven, necessary vaccines becomes even harder to come by. I'd have certainly liked to see a reasonable track record of usage and/or a shift in the economics before mandating the vaccine.

Do not misunderstand - Gardasil is clear breakthrough vaccine and has significant value in reducing the number of cervical cancer cases. I'd just like to see a better economic model first.

By anonimouse (not verified) on 15 Feb 2007 #permalink