Trust and accountability in the vaccine-autism wars.

There's a new feature article by Liza Gross [1] up at PLoS Biology. Titled "A Broken Trust: Lessons from the Vaccine-Autism Wars," the article does a nice job illuminating how the themes of trust and accountability play out in interactions between researchers, physicians, patients, parents, journalists, and others in the public discourse about autism and vaccines. Ultimately, the events Gross examines -- and the ways the various participants react to those events -- underline the questions: Who can we trust for good information? and To whom are we accountable for our actions and our decisions? In many ways, it strikes me that the latter question needs more consideration than people typically give it.

The question of trust, on the other hand, is one with which people seem more ready to grapple. The challenge, however, is that such grappling seems more often than not to result in mistrust.

Consider, for example, the outcome of efforts to be transparent about the contents of foods and medicines, and to err on the side of caution in instances where definitive information was lacking. You would think such efforts would inspire trust.

Sometimes, they don't.

In 1997, a US congressman from New Jersey inserted into a funding bill a provision that gave the Food and Drug Administration (FDA) two years to measure levels of mercury in all products under its jurisdiction, and release its findings to Congress and the public. The FDA's analysis revealed that because several new vaccines were added to the immunization schedule after 1988, some infants could be exposed to as much as 187.5 micrograms of ethylmercury by the time they were 6 months old--if every dose of Hib, hepatitis B, and DTaP contained thimerosal.

Based on this new finding, says [UC-San Francisco medical anthropologist Sharon] Kaufman, leading vaccine experts began to investigate the possibility that mercury in vaccines was putting kids at risk. While the ethylmercury levels exceeded the federal safety guidelines for methylmercury, which gains toxicity as it accumulates through the food chain, no guidelines existed for ethylmercury at the time. Its toxicity was largely unknown; however, there was evidence that very high doses of ethylmercury could cause neurological damage. It was also known that methylmercury can cause subtle neurological effects in infants born to mothers who eat large amounts of fish and whale meat. Studies have since shown that ethylmercury is eliminated much faster than methylmercury and is unlikely to accumulate. But in 1999, no one knew what dose to consider safe for the developing brain.

Given the uncertainty about ethylmercury's toxicity, Neal Halsey, director of the Institute for Vaccine Safety at Johns Hopkins University, urged vaccine policymakers at the CDC and American Academy of Pediatrics (AAP) to remove thimerosal from vaccines as a precautionary measure and to maintain public confidence in their safety. The agencies agreed, and vaccine manufacturers responded quickly; by March 2001, no children's vaccines contained thimerosal.

Anticipating the FDA's release of its findings, the AAP issued a statement explaining its decision as an effort to minimize children's exposure to mercury, asserting that "current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer". Unfortunately, Kaufman says, "rather than reassuring parents, the statement fueled public fears and prompted all sorts of questions."

To Halsey, one of the most respected figures in the vaccine world, simply ignoring the FDA's findings was not an option. He hoped the rapid response would demonstrate the government's "commitment to provide the safest vaccines possible". But it was too late for reassurances. Several months later, Medical Hypotheses--an unconventional journal that welcomes "even probably untrue papers"--received and later published a purely speculative article called "Autism: a novel form of mercury poisoning". Two of the authors, Sallie Bernard, a marketing consultant, and Lyn Redwood, a nurse, had just launched the parents' advocacy group SafeMinds to promote their thimerosal hypothesis. Although their now debunked theory appeared in a journal that openly eschews peer review and evidence-based observations, several parent advocacy groups still cite it as evidence that mercury in vaccines causes autism.

Imagine you're someone charged with keeping a product regulated by the FDA safe. Substance X is in that product (and is in it for a good reason, although possibly its function could be accomplished with a different ingredient or a different mode of using the product). The possibility is raised that X might cause harm. Of course, it might not. Before the matter has been studied (either exhaustively, or preliminarily), how should you regard the potential for harm?

My impulse would be, if the product did not need X, to go without it. But this doesn't consider the potential impact the removal of X might have on the attitudes of people using the product. In the case of the removal of thimerosal from vaccines, members of the public responded to a move that was intended to err on the side of caution by asking:

  • Why are you removing it?
  • Why didn't we know it was in there in the first place?
  • What else is in there that we didn't know about (and what harm could it cause)?
  • Could that stuff you're taking out be what harmed my kid?
  • Could something else that's in there that we don't know about (because you haven't told us) be what harmed my kid?
  • Can you prove to me that the stuff you took out didn't harm my kid (or other kids)?
  • If it wasn't that stuff you're taking out, what did hurt my kid?
  • What do you mean you don't know?

There may well be more underlying this mistrust. The FDA is a government agency, and suspicion about the government (whether of secret plots or mere incompetence) is a national pass time. As well, non-scientists seem to have some issues with the medical and research communities.

By 2004, the IOM [Institute of Medicine] panel had reviewed over 200 epidemiological and biological studies for any link between vaccines and autism. In its eighth and final report, the panel unanimously determined that there was no evidence of a causal relationship between either MMR or thimerosal and autism, no evidence of vaccine-induced autism in "some small subset" of children, and no demonstration of potential biological mechanisms. Considering the matter resolved, the panel recommended that "available funding for autism research be channeled to the most promising areas".

The report should have delivered the final blow to the vaccine-autism theories. Instead, it gave anti-vaccine activists a new target. An online group called Parents Requesting Open Vaccine Education--or PROVE, a not-so-subtle challenge to scientists to "prove" that vaccines don't cause autism--posted a roundup of parents' groups denouncing the IOM panel as "riddled with conflicts of interest" and urged parents to spread the word that panelists conspired "to sweep a generation of children under the rug and maintain current vaccine policy at any and all cost".

While it might be tempting to pin this reaction entirely upon non-scientists' poor understanding of science and its methods for building a body of reliable knowledge, the situation is probably more complicated. Conflict of interest is a serious issue in the conduct of science. Pharmaceutical company influence over how research results are reported and how physicians make treatment decisions has been documented and covered in the mass media.

This is one of the reasons that bad behavior by one scientist or physician is a problem for the whole professional community. The public has a hard time separating a professional community from the misdeeds of some of its members. Maybe the professional community takes serious action to respond to such misdeeds, but if the public doesn't see it, the public may start to think that the main point of the professional community is to help its members profit financially.

To whom or what are medical researchers and physicians accountable? Surely they are accountable to the patients counting on them for proper care and accurate information. They are accountable to their professional communities, whose standards and reputation are entwined with their own. Arguably, they are also accountable to the facts as they have been established using recognized methodology (and to updated facts delivered by new research).

In the discussions about vaccines and autism, though, there are some other relationships that make non-scientists more wary.

Are medical researchers and physicians accountable to the dominant paradigm -- even though (as the casual reader of Kuhn will point out) scientific paradigms are often discarded? They are, but not slavishly so. Breaking successfully with the paradigm that guides current research requires coming up with an alternative and persuasive reasons to prefer it over the one it's replacing.

Are medical researchers and physicians accountable to the corporations funding their research? The insurance companies making decisions about what treatments are covered? Their own financial interests? What precisely is the give and take in each of these relationships?

And do these relationships swamp out their accountability to their patients, their professional communities, or the truth? Medical researchers and physicians would say that they don't -- but wouldn't they say this even if they did?

What with human frailty and the reality of bills that need paying, it's not hard to be suspicious.

The suspicions are amplified when things happen that are not easily explained. When a child's developmental progress seems suddenly to stall or to turn around for no obvious reason, the people who inspire suspicion already may seem like attractive candidates for the villain who is somehow responsible.

In April of 2008, CNN's Larry King hosted a show on the vaccine-autism "debate" featuring Jenny McCarthy, a celebrity "autism mom" promoting a book about her son Evan's "recovery" from autism. McCarthy told King that she speaks to thousands of moms every weekend who relay the same experience: "I came home, he had a fever, he stopped speaking, and then he became autistic." "It's time to start listening to parents who watched their children descend into autism after vaccination," she urged, because "parents' anecdotal information is science-based information." McCarthy said the Poling decision proved that "vaccines can trigger autism." No scientists were on hand to challenge her.

"There's a lot of good autism research out there," says Paul Offit, chief of infectious diseases at Children's Hospital of Philadelphia and head of the hospital's Vaccine Education Center. "But you never hear about it because the anti-vaccine movement has taken this issue hostage." Offit has turned down requests to appear on any show with McCarthy. "Every story has a hero, victim, and villain," he explains. "McCarthy is the hero, her child is the victim--and that leaves one role for you."

Assuredly, there is a significant difference between parents' anecdotes and scientific information. Parents are generally working with a very small sample size (as far as the number of kids they are observing), and they are not always on their guard against confirmation bias or other factors that may skew what they notice and how they interpret it.

However, it's possible that part of why Jenny McCarthy has an audience is that there is a nugget of truth in what she says. Many patients, and parents of patients (and other care-takers of patients who are the primary persons interacting with health care providers on the patients' behalf) know all too well the experience of not being listened to -- of having a doctor treat you like you don't know anything about what's going on with yourself or your child or the patient you are taking care of. This can be incredibly frustrating, seeing as how there is at least the potential that information you have from extensive day to day interactions with the patient may be relevant and useful. As well, even folks who are trained as scientists (and who, arguably, may understand the scientific method better than the physician with whom they're dealing) can be on the receiving end of this kind of dismissiveness.

Being accountable to your profession's existing body of knowledge does not mean you're not accountable to deal with each actual patient in front of you as an individual -- one whose case may vary in interesting ways from the norm, and one whose actual experiences and concerns ought to be taken seriously. Brushing these off tends to erode trust. (It's worth noting, of course, that you can listen to concerns and experiential information, and indicate that you are taking it seriously, while drawing different conclusions than the person presenting them.)

Kaufman sees the persistence of the vaccine-autism theory as a consequence of how individuals manage risk in modern society. People must trust experts to protect them from risk, whether they're getting on an airplane or vaccinating their kids, she explains. When faith in experts erodes, personal responsibility prevails. "People think if you blindly follow experts, you're not taking personal responsibility," she adds.

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. But Offit also wishes scientists would do a better job of communicating theoretical risk and the difference between coincidence and causation. Once you raise the notion of a possibility of harm, he says, "it's hard for people to get that notion out of their head."

Kaufman thinks the problem is more immediate than bridging the gap between lay and expert understanding of risk. Parents treated theoretical risk as fact even as scientists tested, and ultimately rejected, the possibility that thimerosal might harm children. Thinking the institutions that were supposed to protect them from risk failed, Kaufman says, people now do their own research. But instead of leading to more certainty, she explains, "collecting more information actually increases doubt."

There are a lot of factors coming together here.

First off, there's the question of whether to accept expert advice at face value. If you're already mistrustful of the expert offering the advice (perhaps because he or she seems unwilling to listen to the experiential information you have or to explain how it fits with the advice on offer), just accepting that advice probably isn't going to happen. But we shouldn't forget that there are competing voices offering what they claim is expert advice. How can a non-expert recognize the real experts from the charlatans?

Don't we want people to be critical consumers of information?

We do. The problem is how exactly people who are not experts are supposed to evaluate the expertise of others. If they knew enough about the subject matter on which the putative experts are holding forth, they could just evaluate the advice itself. But, since they need the experts to deliver the expert information, they can't necessarily tell the real experts from the fake ones by evaluating their claims, and they need to find other ways to assess expertise. These might include educational and work credentials, or publications -- but then you need to be able to distinguish the good schools from the flaky ones, the rigorous journals from the non-rigorous ones (not to mention the publications that look like journals but are industry-sponsored fake journals).

That's a lot of work. If the local TV news team or Oprah's bookers aren't screening out the fake experts, how can a parent, armed only with the internet and a few free hours after work, be expected to do it?

Another issue here is that people have a hard time wrapping their heads around probabilities. It's too simple here to say that people don't get, probabilities, though. I think, rather, that we have some outcomes that we're very serious about avoiding, even if the probabilities of those outcomes are fairly low. If an outcome would result in permanent damage and we perceive it as being in our control to avoid it (even if the chances of it happening are pretty small to begin with), sometimes we'll do that. Perhaps this is a way of feeling like we have some measure of control in a world where lots of the bad outcomes that are possible seem beyond our control to prevent.

But there is necessarily some selective attention here. Efforts to avoid one bad outcome may overlook our prospects for avoiding another bad outcome -- one that could turn out to be much, much worse. If autism is the bad outcome in the center of a parent's visual field, death or permanent disability from infectious diseases like measles is the bad outcome lurking on the periphery.

Though overall vaccination rates in the US are high, vaccine-resistant communities like Ashland have emerged in several states, including Colorado, Washington, and California, as more parents adopt alternative schedules or seek exemptions to avoid vaccination. Recent studies have shown that exempt children in Colorado were 22 times more likely to contract measles and about 6 times more likely than vaccinated children to contract pertussis, while exempt children nationwide were 35 times more likely than vaccinated children to contract measles.

Sadly, studies suggest that the burden of lowered immunization rates will likely fall disproportionately on poor people living in crowded conditions, hotbeds of disease transmission, and exacerbate existing health disparities among minority populations--where kids go unvaccinated not by choice but because of limited access to health services. Exemptions also pose a threat to children who can't be vaccinated because of a medical condition or who didn't mount an immune response to the vaccine, as well as to hundreds of thousands of people on chemotherapy, recovering from organ transplants, or struggling with compromised immunity.

Here, it's appropriate to ask the question: To whom are parents accountable?

Of course, parents are accountable to the kids they are raising. They have a duty to do what is best for them, as well as they can determine what that is. They probably also have a duty to put some effort into making a sensible determination of what's best for their kids (which may involve seeking out expert advice, and evaluating who has the expertise to be offering trustworthy advice).

But parents and kids are also part of a community, and arguably they are accountable to other members of that community. I'd argue that members of a community may have an obligation to share relevant information with each other -- and, to avoid spreading misinformation, not to represent themselves as experts when they are not. Moreover, when parents make choices with the potential to impact not only themselves and their kids but also other members of the community, they have a duty to do what is necessary to minimize bad impacts on others. Among other things, this might mean keeping your unvaccinated-by-choice kids isolated from kids who haven't been vaccinated because of their age, because of compromised immune function, or because they are allergic to a vaccine ingredient. If you're not willing to do your part for herd immunity, you need to take responsibility for staying out of the herd.

Otherwise, you are a free-rider on the sacrifices of the other members of the community, and you are breaking trust with them.

Our ability to make informed decisions, and to make decisions in a way that does not cause undue harm to others -- indeed, our very ability to live with others in a community -- comes back to trust and accountability. None of us can have complete information; our decisions are made with the best partial information we can marshall at the time. To get good information, we (including scientists) depend on the efforts of others as well as on our own efforts. And the decisions we make, more than we realize, have consequences for people we may not have considered or consulted when we made those decisions. Even focusing on a small task that seems relatively isolated -- taking the best care of our children we know how -- can create conditions that make it really hard for other people in our community to succeed when they focus on the same task in their own immediate environment.

I think this is a reasonable initial analysis of the problem. How to address this problem -- how to get people to be accountable to each other -- is a much harder question to answer.

I should mention here that in the examination of accountability and failures of trust around vaccines and autism, I was struck that people with ASD seemed absent from the conversation. Casting their lives in terms of "vaccine damage" and other harms to be avoided does little to address their needs, nor to address our accountability to them.

Orac also weighs in on the PLoS Biology article.
[1] Gross L (2009) A Broken Trust: Lessons from the Vaccine-Autism Wars. PLoS Biol 7(5): e1000114. doi:10.1371/journal.pbio.1000114 (Published: May 26, 2009)


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I should mention here that in the examination of accountability and failures of trust around vaccines and autism, I was struck that people with ASD seemed absent from the conversation. Casting their lives in terms of "vaccine damage" and other harms to be avoided does little to address their needs, nor to address our accountability to them.


"If you're not willing to do your part for herd immunity, you need to take responsibility for staying out of the herd." This is poppycock. So are you saying that every time you get a cold or flu, or even something worse like whooping cough even though you were vaccinated because that vaccine is not very effective, then you're going to stay home for a week or a month or whatever it takes? I doubt you would agree to that.

In 2008, Dr. Jeffrey Baker (whose quoted in the PLOS article) wrote a similar article in a mainstream public health journal titled, "Mercury, Vaccines, and Autism: One Controversy, Three Histories. Am J Public Health, Feb 2008; 98: 244-253" in which he blamed the whole autism/vaccine issue on parents who distrusted the IOM/CDC, parents lack of understanding the different forms of mercury and trial lawyers. He made several false and misleading statements, some of which I addressed through a published reply, "Mercury, Vaccines, And Autism: One Controversy, Much Propaganda". Even though he knew he made some serious mistakes, he repeated the same lies on an Oregon radio show in January, 2009. Ms. Stemwedel's article and the one in the PLOS journal do the same thing. Here is my published letter;

In the article, "Mercury, Vaccines, and Autism: One Controversy, Three Histories" the author Dr. Jeffrey Baker, while trying to sound impartial, misrepresents several facts in order to support his conclusions. He starts by citing the many findings of the Institute of Medicine (IOM) without mentioning that the IOM was commissioned by the CDC to issue a report on "Vaccines and Autism." The CDC approves, mandates, promotes, and distributes vaccines. He does not mention that every member of the IOM committee had ties to the vaccine program (1). There were no independent toxicologists on this committee. One would think this would be important when considering the safety of mercury in vaccines.

The author cites the inventors of thimerosal and writes, "extensive in vitro testing shows that thimerosal was 40 to 50 times as effective as phenol against Staphylococcus aureus." He then claims "concerns over neurotoxicity in infants receiving thimerosal from vaccines were never raised by medical or government authorities before the late 1990s." This is false. In 1982, an independent panel was convened by the FDA (2). The panel called for the removal of mercury, including thimerosal, from all over-the-counter products. It declared thimerosal as being both unsafe and ineffective. It was singled out as being "no better than water in protecting mice from fatal streptococcal infection." It was shown to be 35.5 times more toxic to embryonic chicken heart tissue than the aforementioned Staphylococcus aureus.

He goes on to declare that the "comparatively miniscule exposures [of thimerosal] involved in vaccines were well within all published guidelines for mercury exposure." Unfortunately, he never took the time to analyze a vaccine vial for mercury concentration. The Hepatitis B vaccine, administered at birth for over ten years, contained 25,000 parts per billion (ppb) of mercury in the multi-dose vaccine vial. The multi-dose DTP and Haemophilus B vaccine vials, administered 4 times each in the 1990s to children at 2, 4, 6, 12 and 18 months of age, contained 50,000 ppb mercury. According to the EPA, any liquid that contains more than 200 ppb mercury is to be classified as hazardous waste based on toxicity (3). It's hard to believe that a level of mercury 250 times higher than hazardous waste levels would be referred to as "miniscule." The fact is, on any given day of receiving even a single thimerosal containing vaccine in the 1990s, all published guidelines for mercury exposure were exceeded.

Several pages of the paper examine the toxicity of methylmercury and its past use as a fungicide. We are led to believe that this form of mercury is much different than ethylmercury, the type found in vaccines. This is in spite of the fact that ethylmercury was used for the same purpose. In fact, Ethylmercurric Chloride, the material used as a fungicide (which was banned long ago) is what is used to make thimerosal. This can be easily confirmed by looking in a Merck Index. We now know that this type of mercury deposits twice as much inorganic mercury in the brains of primates as compared to equal doses of methylmercury (4). Inorganic mercury, following the de-methylation of organic mercury, has been identified as the primary neurotoxic agent in primate studies (5).

The author mentions the book, "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic" by David Kirby. It contains 436 scientific references. The author did not disclose if he read the book. This may have helped his argument since this book was read by many parents of autistic children.

We are then told about the impact of trial lawyers concerning this situation. The author does not disclose how much money has been awarded to trial lawyers who represent autistic children. It's my understanding that this number is zero.


(2) U.S. Food and Drug Administration, proposed rules, Federal Register 47/436-01, January 5, 1982.


(4) Burbacher T, Shen D, Liberato N, Grant K, Cernichiari E, Clarkson T. 2005. Comparison of blood and brain mercury levels in infant monkeys exposed to methylmercury or vaccines containing thimerosal. Environmental Health Perspectives. 113:1015-1021.

(5) Charleston J, Body R, Bolender R, Mottet N, Vahter M, Burbacher T. 1996. Changes in the number of astrocytes and microglia in the thalamus of the monkey Macaca fascicularis following long-term subclinical methylmercury exposure. Neurotoxicology. 17:127-138

Part of the vaccine issue has to do with the unknown risk of vaccines. Given the very low risks of contracting most vaccine-preventable diseases, and the even lower risks of having long-term negative effects from them, some of us prefer to take those risks than mess with the unknown risks of exposing our kids to vaccines on the schedule doctors set. We don't know enough about the immune system to know what effects it can have to vaccinate against eight things at once.

I don't think there's great evidence out there for negative effects of vaccinations. I also don't think there's great evidence that the current schedules will have no long-term effects. Even if we assume the immune system handles all of them just fine, getting vaccinated against chicken pox as a child may not protect you for life. You're more likely to lose immunity as an adult than if you had chicken pox (a very low-risk disease) as a child, and be in more danger because adults tend to have worse cases.

Sarah said "Given the very low risks of contracting most vaccine-preventable diseases, and the even lower risks of having long-term negative effects from them"

The reason that there is a low risk of contracting many of the vaccine preventable diseases is due to VACCINES!!! You are being a parasite by relying on other people getting the vaccine, but the herd immunity is waning due to bad science. Many of those who do not vaccinate tend to gather in same groups, so that is where outbreaks like the one in San Diego, Indiana and other places occur.

Now about the risks of the vaccines, you do know that measles carries at least a one in a thousand risk of severe neurological impact (deafness, blindness, paralysis and even death)?

Can you please tell me what actual factual scientific evidence you have that the MMR is riskier than measles, mumps and rubella? Remember it has to be a real paper published in a real journal I can access at my local medical school library (not "Medical Hypothesis", if you want to know why look up the word "hypothesis").

Also do the same with the DTaP, remembering that over a dozen babies each year die from pertussis.

This is exactly how I feel, who do you trust? Currently I'm reading "Autism's False Prophets" by Paul A. Offit. It seems to cover all the points one should weigh, but how do we know he is honest in his reporting? I tend to think he points people out and actual facts, that they have to be mostly true. But again, as a lay person, I'm leaving the point of "beyond reasonable doubt" with someone else. We all do. Lay or not, we bank what we know, off of the work of other people. We can not dedicate our lives enough to deeply understand all the content that propels us forward to learn more. So, a little understanding to the other side, as show in this article, is much needed. No one likes being called an idiot.

Thanks for the article, I enjoyed reading it.

By jlorraine (not verified) on 29 May 2009 #permalink

jlorraine said "Currently I'm reading "Autism's False Prophets" by Paul A. Offit. It seems to cover all the points one should weigh, but how do we know he is honest in his reporting?"

Go to page 249. What do you find there?

Also, another really good book to read:…

There is a video review in the ScienceBlogs book club, plus another review here:

My kids are not vaccinated, and I am not a free-rider. So far my kids have had chickenpox, pertussis, and measles. I expect my kids to get many of the diseases for which there are vaccines. By the way, the measles was from a child who had recently gotten the MMR, and was shedding the live virus.

Please stop the scaremongering. My kids got through those illnesses just fine, and are extremely healthy. I've chosen the possibility of occasional acute disease over the very real possibility of chronic disease. For example, 1 in 10 kids now has asthma! 1 in 67 now has autism.

Sorry Jennifer,

you are delusional - every time your kids have caught a preventable disease you've been playing Russian roulette with their lives - and the lives of countless kids in your area.

I also question how you know your kids got the measles from a kid who received the MMR vaccine.

Also, regarding Chickenpox - later in life your kids might run into shingles a painful, and sometimes devastating resurgence in the chickenpox virus.

Jennifer said ". For example, 1 in 10 kids now has asthma! 1 in 67 now has autism."

Evidence, please.

HCN, that's for the book rec, I'm gonna look into that one. Yes, I see all the notations for Offit's book. And I think that's great, but I'm not gonna read through all of them and fact check him. That was my point, we all rely on other people's work, and we often pin point who we think is reliable, and trust their hard efforts to educate us.

Jennifer, I'm sorry you think people are scaremongering. But the truth is, when you go through old grave yards and see the hundreds of thousands of grave markers for babies and young children who didn't make it past their first few years, you realize that it wasn't fake fear, but real tragedy that spurred science to help find a "cure". It was a lot more tragic than the autism rates today. Your rate for autism is actually quite off. Stats of 1 in 150 is reported as closer, BUT remember the clinical definition of autism was changed to autism spectrum in the 1990's. This increased the levels seen overall in autism. Not to mention autism awareness has risen significantly as well, encompassing many more children whom wouldn't have been diagnosed early on, in previous years. This does not completely satisfy the autism rates increasing, but does add to the number reported of children diagnosed with autism.

I'm glad your children got over their illness fine, but many of these illnesses have horrible side effects other than death. Many parents do not have jobs that support staying home with their very ill children while they suffer through diseases, and not to mention our medical services do NOT have enough funds or physicians to care for a mass groups of children going through these diseases. So while for you, and your family, it made sense, and you had ways to care for your children, but most do not.

By jlorraine (not verified) on 30 May 2009 #permalink

"My kids are not vaccinated, and I am not a free-rider."

I'm very sorry, Jennifer, but you are.

"My kids got through those illnesses just fine, and are extremely healthy."

Then they are bloody lucky. (I suppose you couldn't care less whether the other kids whom you exposed to their diseases were as lucky.)

I grew up just a few years after diseases such as these were commonplace, and they were far from wiped out even then. I vividly remember an art teacher in my school falling ill. A substitute taught the class for several days, and then he told us that the teacher had been put in an iron lung. I still remember the utter silence in the classroom a few days after that, when the substitute told us that he had died. It was from polio.

I wasn't so lucky with chicken pox. I grew up in the 1960s, and the vaccine for it only came out in 1995. Yes, I survived it, as most children did. But in 2007 I had shingles, which I found unpleasant, disfiguring and painful. There was nothing my doctor could do for me but prescribe some painkillers. Thankfully, I didn't suffer the nastier effects such as permanent nerve pain, facial paralysis, ear damage or even lesions inside the eye sockets.

These diseases that you choose to treat as minor childhood illnesses once killed hundreds of thousands of children much like your own, scarring or crippling the ones who survived. When one of these diseases reared its ugly head in a school district, school was stopped and everyone stayed home for weeks or months until the epidemic passed, praying it wouldn't strike *their* family. If you don't believe me, talk to your grandparents or anyone else who lived during those days -- or read the accounts of people who lived through them.

Thanks to people like you, those days are fast approaching us again -- measles is already staging a comeback. You talk about asthma: I am an asthmatic, and one of my fears is needing emergency treatment and being unable to get it because the emergency rooms are swamped with sick children -- children who are sick and even dying because of diseases that were supposed to already be conquered.

You are playing Russian roulette not only with your own children's lives, but the lives and safety of everyone else.

By Maureen Lycaon (not verified) on 30 May 2009 #permalink

jlorraine said "And I think that's great, but I'm not gonna read through all of them and fact check him. That was my point, we all rely on other people's work, and we often pin point who we think is reliable, and trust their hard efforts to educate us."

That is exactly what the book "Lies, Damned Lies, and Statistics" is all about. It means to look at who is giving you the information, and what their stake in the outcome is.

For instance, someone above said that David Kirby used over 400 references, now running up to the upstairs bookcase, grabbing my copy of Autism's False Prophets, I see it has only 247 references. So what does that tell you: nothing.

One does have to look at the quality of the references, which is why I am a big meany when I ask for evidence. I am pretty sure one of the references in the Kirby's book is the laughable paper in "Medical Hypothesis" that was co-authored by one of the main characters in his book. This was a paper authored by unqualified people trying to show how autism is mercury poisoning, when the symptoms are not really the same (do autistic children have abnormally pink skin?). Actually, I might stop by the library today and look at the "always on the shelf" copy of Kirby's book to check those references (I bet a bunch are from the "let's chemically castrate the kids" Geiers, who are infamous for using their own shoddy papers as references).

"Also, regarding Chickenpox - later in life your kids might run into shingles a painful, and sometimes devastating resurgence in the chickenpox virus."

Actually, anyone with the chickenpox virus in their body, from the vaccine or natural disease can get shingles later in life. The only way to avoid the possibility is to never get the vaccine and never get chickenpox.

Before the chickenpox vaccine came out in 1995, shingles was normally an old person's disease. Now, young adults and even young children are getting shingles. The U.K. does not routinely offer the chickenpox vaccine for this reason.

It is true that much money is spent for health information, but it is also quite true that so far no will find the cure for terrible diseases and quickly became generalized in our body, it calls on the authorities to better distribution of this money because it is spending so far in vain, I have friends who suffer from cancer, HIV, Alzheimer's, and so far we can not find any solution to the disease, only the medicines in vicodin to control their pain, but until you take the same? actually there will be some day, the cure? Please have to be sensible and remember that nobody is free from disease and therefore it is important for everyone.

Jennifer said "Now, young adults and even young children are getting shingles. The U.K. does not routinely offer the chickenpox vaccine for this reason."

So what? They used to vaccinate regularly for tuberculosis when the USA did not (there have been discussions in the UK, it all centers around cost). The rates of shingles are changing, one speculation is that it is due an increase in the population vulnerable to shingles. Ever hear of "Baby Boomers"? The peak birth year was 1957, which would make them around 52 years old. From this paper: ... "Females had higher rates than males at every age; however, the difference between females and males was greatest for the 50-54 years age group and declined for older age groups. The increased rate of shingles in Alberta began before varicella vaccine was licensed or publicly funded in Alberta, and thus cannot be attributed to vaccination."

All of my children are still eligible to get shingles because they all got chicken pox a year before the vaccine came out, the youngest is not yet an adult. There will need to be more time to see if shingles rates go down, especially since the one dose level was inadequate and children were still getting chicken pox (though a less severe form than my kids got, thinking kids should endure chicken pox is akin to torture --- it is not fun, and it was especially not fun for the one family in the school whose young child ended up in the hospital with a possibility of losing a leg to a secondary bacterial infection).

Plus, I should tell you that three year old letters are not exactly relevant evidence.

Gary said "It is true that much money is spent for health information, but it is also quite true that so far no will find the cure for terrible diseases "

Which is why it is wiser to prevent the diseases through sanitation, vaccines, reduction of risky behaviors such as smoking, sun bathing and others, and practicing good behaviors such as a good diet, exercise and regular health check ups.

Gary continued "I have friends who suffer from cancer, HIV, Alzheimer's, and so far we can not find any solution to the disease, only the medicines in vicodin to control their pain,"

What does that to do with vaccines? And truthfully, I would never take Vicodin because it makes me sick to my stomach.

You see, there is enough genetic variation in humans that one medication works different than another. Which is one reason that vaccines are not 100% effective, another reason for maintaining herd immunity.

Jennifer, I don't want to be rude, but I don't see any evidence for your assertion about shingles in the reference you posted.
A search on Google Scholar reveals no evidence for your claim. See here, for example, and look at the studies which cite this paper.
However, you might be interested in this reference, about the risks of birth defects when pregnant women get chickenpox.…
For each common Western childhood illness, there's a better than 95% chance that each child will recover without complications. But there's a lot of illnesses, and explaining to a child who has been affected (or the parent of a child who was affected by a disease your child transmitted) that this unfortunate, preventable consequence, was 'natural', and occurred because you are scared of bogeymen, is something I would not have the heart to do myself.

MW said "The author mentions the book, "Evidence of Harm: Mercury in Vaccines and the Autism Epidemic" by David Kirby. It contains 436 scientific references. The author did not disclose if he read the book. This may have helped his argument since this book was read by many parents of autistic children."

So on my way home from an errand I stopped in at my local library and looked at Kirby's book. Most of those 400+ references were news articles, conversations and letters. Many of the sources would be those that have a set bias, from those who are litigants to those who are trying to sell "cures".

Also, what special expertise did Kirby bring to the discussion? Before he was tapped to write the book by Safe Minds, he was mostly a free lance writer who sold travel stories to the New York Times.

This is where Seethaler's blook, "Lies, Damned Lies and Statistics", is relevant in this discussion. She goes through how to interpret the data, and evaluate the value of the conclusions based on the stakeholders.

Especially when you cite Burbacher's study, which is constantly misinterpreted. The only real conclusion one can make from that somewhat flawed use of animal models was that methylmercury is different than ethylmercury (which has a shorter half life). The interesting thing is that he could not obtain thimerosal containing vaccines, and had to make up an equivalent... because those vaccines were no longer generally available.

If you have any real evidence that the vaccines are riskier than the diseases, please be sure to list them. The book, and your other cites do not include that information.

As far as MW's statement: "We are then told about the impact of trial lawyers concerning this situation. The author does not disclose how much money has been awarded to trial lawyers who represent autistic children. It's my understanding that this number is zero."

Actually it is close to $2 million of tax payer money. This is something you would know if you followed this blog: ... "Attorneys for the petitioners in Cedillo v. HHS (Case No. 98-916V) have been granted an interim award of 1,452,806.11 for fees and costs..." and "In a ruling issued on March 5, Mr. Webb was awarded $216,164.09 for fees and costs..."
and ... " The final bottom line over and above the award of $103,000.00 paid to the petitioner in Sabella v. HHS was $62,897.50 for attorneysâ fees and $24,637.28 for costs."
... lots more, but I am at my two URL limit, you can find more by putting the name "Shoemaker" in the search window on the upper right hand side. He is a very important "stakeholder", not only has he been handsomely paid by vaccine litigation he is on the board of Barbara Loe Fisher's organization, NVIC. He did attempt to silence the owner of that website, but that earned him only a sanction of a judge in New Hampshire, and a reputation as an enemy of free speech on the internet.

"However, you might be interested in this reference, about the risks of birth defects when pregnant women get chickenpox."

This is exactly why children should be allowed to get chickenpox as children, and gain lifetime immunity, rather than giving them a vaccine that does not last a lifetime, making them vulnerable as adults.

Can you guarantee that everyone will get chickenpox on your command? Or are you going to force them to get the disease? The 'good old days' of benign childhood illness weren't good or benign - and all the cases I've seen of these issues had their lack of exposure back in the pre-vaccination days. For that matter, I remember spending 5 days of a vacation with chickenpox, sleepless and scratching myself to distraction as my parents drove back to our residence. I'd have been very interested if a vaccine had been available. Smallpox didn't kill most europeans either, why would we want to tamper with nature.

Vaccine opponents are dealing in fantasies and bogeymen, and thinking of good old days that never existed. Of course the CDC is trying to cover up vaccine injuries and force people to get harmful vaccines, because.... well, I've never heard why.

Stewart, do you think the current epidemic of chronic childhood disease and autism is good and benign? All I'm saying is that my kids have experienced the alternative, (chickenpox, measles, and pertussis), and it was not scary, horrible, or life changing.

You are right, not everyone would get childhood diseases during childhood if we stopped vaccinations. So give the vaccines to adults if they haven't gained immunity yet.

Before my detailed remarks, let me again state that I SUPPORT safe vaccines and cost-effective vaccination programs.

1. As a PHD chemist and philosopher, you should have first researched the toxicological literature (which is where the proof or lack of proof of safety can be found) for yourself BEFORE attempting to weigh in on the real isue -- the NOAEL (No Observed Adverse Effect Level) for Thimerosal in the developing child from quickening to age 18. However, it is obvious that you have failed to do so.

2. As a PhD Analytical Chemist who has been engaged in the review of the reserach and in studies desigende to assess Thimerosal toxicity in living human cellular systems and tissues for a decade, I know that Thimerosal at the 0.01% level in some vaccines including 9 that are still approved for general use is toxic. My certainty comes from Japanese studies on humans that found a half-life for the retained mercury in humans of about two decades and a chronic toxicity study [Mason M. Toxicology and Carcinogenesis of Various Chemicals Used in the Preparation of Vaccines. Clinical Toxicology, 1971;4(2):185-204], where adult rats were tested in a chronic toxicology study injecting groups of rats with 1.0, 0.3, 0.1, 0.03 mg/kg, or 0.0 mg/kg Thimerosal in sterile saline twice weekly for an extended period of time and monitoring their general health. For Thimerosal, Dr. Mason, a veterinarian, reported a linear adverse effect of bronchopneumonia against Thimerosal dose. Calculating the daily dose at the lowest level and using the ACCEPTED toxicity scaling factors of 10 each for: a) rat-to-human interspecies effect, b) within-human variability of effect, c) the known increased sensitivity in the developing child, and, because there was no level other than "0" (zero) for which there was no reported adverse effect, a not more than (NMT) delimiter, the NOAEL for INJECTED Thimerosal in developing humans is NMT 0.004 micrograms of mercury/kg of body mass/day -- a level that, for the injection of even 12.5 micrograms of mercury (the dose in a 0.25-mL injection of a Thimerosal-preserved flu shot, the minimum dose given) MIGHT be SAFE (below the estimated NOAEL) for a developing child weighing more than 3,125 kg [> 6,953 pounds]. Since the typical quickened child that would survive being born might weigh only 1 kg and full-term newborns weigh about 2.5 to 4.5 kg, it is clear that there is NO apparent assured margin of safety in injecting 0.25 to 0.5 mL of a Thimerosal-preserved flu shot into a developing child.

3. The epidemiological studies upon which claims of a lack of harm have been based are all fatally flawed and non-science BECAUSE either the raw datasets used have been "lost" (e.g., the Verstraten et al. US study and the Fombonne et al. Quebec English-speaking schools study) or access to the data sets used has been refused to independent researchers. Thus, until qualified unbiased independent researchers can access the original data sets, designs and criteria used and confirm their validity or lack thereof, these studies are NOT science and, in the cases where the original data sets are "lost", at a minimum, the published articles should be withdrawn from the journals that published them.

Were this not a short comment, there is much more that could be said. What the laws and the people require is PROOF of SAFETY -- BUT there is NONE. As an independent scientist I find that there is NO reason to trust and the documented evidence, including documents obtained under FOIA and by other means, clearly points to not only intentional duplicity but also to collusive actions to continue knowingly mercury-poisoning fetuses, neonates, babies, children, young adults, adults and the elderly.

If you want to know more, please check the Mason article and read the applicable articles in the "Documents" section of and check the other references cited for yourself.

PS: THe increasing use of vaccines that use polymeric aluminum hydroxy species as adjuvants has also NOT been proven safe and, as recent studies have shown, UNSAFE for some if NOT all who are injected with such vaccines.

Paul G. King,

My certainty comes from Japanese studies on humans that found a half-life for the retained mercury in humans of about two decades ...

Which mercury compound were they studying? I'm not aware of any mercury compound with such a half-life.

... Calculating the daily dose at the lowest level and using the ACCEPTED toxicity scaling factors of 10 each for: a) rat-to-human interspecies effect, b) within-human variability of effect, c) the known increased sensitivity in the developing child ...

All three factors happen to be 10? That sounds unlikely.

By Andrew Wade (not verified) on 31 May 2009 #permalink

In response to Eamon--and please note that I am *not* an anti-vaccinationist; I think if anything Dr. Free-Ride isn't being as nasty to them as they deserve--I don't think there's any research showing that the chicken pox vaccine reduces your lifetime chance of contracting shingles. It's a live virus shot--attenuated, but the vaccine just hasn't been around *long* enough for us to have a good idea of the effect of the attenuation on shingles development (since your immune system can look like it's beaten a chickenpox virus, and shingles can still appear when you're immunosuppressed years later).

This is a consideration that *only* applies to the chickenpox vaccine. And for adolescents and adults (for whom chicken pox itself--which the vaccine *is* known to be effective against--can be pretty serious) who haven't had chicken pox yet should almost certainly get vaccinated.

NB: I'm not a medical doctor, so please don't actually base any decisions on anything I've said unless your doctor says them too.

Avrom, if chicken pox no longer circulates... and no one ever gets the disease, then no one gets shingles. It is going to take a while, and you need to look at Japan for the data since that is where the vaccine originated.