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.