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PORTSIDE  November 2010, Week 1

PORTSIDE November 2010, Week 1

Subject:

Battling Misinformed Consent: How Should We Respond To The Anti-Vaccine Movement?

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Battling Misinformed Consent: How Should We Respond To
The Anti-Vaccine Movement?
by Orac
Respectful Insolence
November 5, 2010
http://scienceblogs.com/insolence/2010/11/how_should_we_respond_to_the_anti-vaccin.php#more

As Vaccine Awareness Week, originally proclaimed by Joe
Mercola and Barbara Loe Fisher to spread pseudoscience
about vaccines far and wide and then coopted by me and
several other bloggers to counter that pseudoscience,
draws to a close, I was wondering what to write about.
After all, from my perspective, on the anti-vaccine side
Vaccine Awareness Week had been a major fizzle. Joe
Mercola had posted a series of nonsensical articles
about vaccines, as expected, but Barbara Loe Fisher
appeared to have sat this one out, having posted
nothing. Well, not quite. More like almost nothing. I
noticed that the NVIC did publish a new post earlier
this week that I had somehow missed entitled Plug Into
New NVIC Advocacy Portal & Protect Vaccine Exemptions.
What is this portal? Barbara Loe Fisher describes it
thusly:

    The weeklong series of articles about vaccination
    published on Mercola.com includes the launch of
    NVIC's Advocacy Portal, which is a free online
    interactive database and communications network that
    empowers citizens to protect and enhance vaccine
    exemptions in all 50 states.

And there you have it, the real mission of the anti-
vaccine movement in general and the NVIC in particular,
to discourage vaccination wherever possible under a
false mantle designed to camouflage its true purpose,
the mantle of "informed consent" and "health freedom."
What, you say? Who could ever argue with the concept of
informed consent or health freedom? I can, not because I
don't support the right of individuals to determine what
they will do with their bodies or what treatments they
will or will not accept. Rather, it's because the
"informed consent" that anti-vaccinationists promote
should more properly be referred to as "misinformed
consent." At every turn the anti-vaccine movement
promotes pseudoscience, misinformation, and quackery to
frighten parents into not vaccinating. After all, all
informed consent is based on providing an accurate
accounting of the risks and benefits of an intervention
being proposed. The anti-vaccine movement and the NVIC
downplay the potential benefits with frequent propaganda
claiming that, for example, flu vaccines don't work.
More importantly, they hype the risks of vaccination to
make them seem orders of magnitude more severe than
science does, and if they can't come up with a real
potential complication, they make one up! After study
upon study failing to find an association between
vaccines and autism, they still promote the idea that
vaccines cause autism. Heck, the head of Generation
Rescue, J.B. Handley, was doing it just the other day!

In fact, if there's one thing I've learned over the
years, it's that the idea behind the "informed consent"
argument is not real informed consent. Rather, anti-
vaccinationists hide behind the term to provide a set of
information to parents consisting of cherry picked
studies, misinformation, and pseudoscience that so
completely demonizes vaccines and denies their benefits
that the only rational response to such information, if
the information is accepted as valid, would be to refuse
vaccines. Because most parents don't have the scientific
background to recognize the misinformation promoted by
the anti-vaccine movement, many parents do tend to
accept the propaganda as accurate--or at least as
sufficient to sow fear and doubt in their minds about
vaccines. This is what I meant by "misinformed consent."
Couple the technique of promoting misinformed consent to
an appeal to the idea that refusing vaccines is akin to
freedom, and that combination produces a powerful
appeal, particularly here in the U.S., where appeals to
"health freedom" can be mixed into libertarian "get the
government off my back" politics. Mercola and Fisher
explicitly tap into that sort of sentiment in announcing
the NVIC program:

    "The national forced vaccination lobby is well
    organized and they have billions of taxpayer dollars
    plus billions more from Big Pharma at their disposal
    to persuade state legislators to approve more and
    more vaccine mandates," said Dr. Mercola, "That is
    why I am partnering with NVIC and encouraging
    everyone to join with us and take action now to
    protect vaccine exemptions in all states."

    NVIC co-founder and president, Barbara Loe Fisher,
    said "Dr. Mercola and I know it is time to get
    serous about legally defending the human right to
    informed consent to medical risk-taking in America.
    Everyone who registers for NVIC's Advocacy Portal
    will learn how to work in their own state for the
    legal right to make voluntary vaccine choices for
    themselves and their children."

Note the "framing," if you'll excuse the term. To Fisher
and Mercola, public health officials aren't referred to
as public health officials. That's way too neutral a
term. Rather, they're the "forced vaccination lobby."
Even worse than that, they aren't just the "forced
vaccination lobby" out to steal your freedom away;
they're the "forced vaccination lobby" funded by an
unholy cabal made up of the government and big pharma.
Similarly, to Fisher and Mercola, undergoing vaccination
to prevent disease is not, as science tells us, a high
benefit/very low risk medical procedure. Oh, no. To
Fisher and Mercola, it's "medical risk-taking," as
though vaccinating were some sort of game of Russian
Roulette. This is what I mean by "misinformed" consent,
and Fisher's been playing the game of representing her
anti-vaccine views as "pro-freedom" for a very long
time. She's been quite good at rebranding the NVIC to be
seen not as the crank organization that it is, but
rather as a "vaccine safety watchdog." This framing
allows the NVIC to represent its portal as a "one stop
shop for vaccine choice advocates":

    "The religious and conscientious/philosophical
    belief exemptions to vaccination are being targeted
    for elimination by drug company lobbyists and
    doctors and organizations with financial ties to
    vaccine manufacturers," said Dawn. "We wanted to
    create a one-stop shop for informing people in real
    time about what is going on with vaccine laws and
    policymaking in their states to help level the
    playing field. Now concerned families can make their
    voices heard and be represented in their own state
    legislatures."

    Dawn emphasized that the NVIC Advocacy Portal, which
    took more than a year to develop, is still "a work
    in progress." "Even though the NVIC Advocacy Portal
    is in its infancy, we knew we needed to launch it
    now to give people a way to take immediate action,"
    she said.

What does this portal offer anti-vaccine activists? A
fair amount of stuff, including contact information for
legislators, instructions for how to try to persuade
legislators to expand vaccine exemptions, online
training sessions on "vaccine choice" advocacy, a rapid
response system that alerts anti-vaccine activists to
legislation that the NVIC wants them to oppose or
support, message boards, and online newsletters. Come to
think of it, I'm half tempted to join the NVIC Advocacy
Portal in order to keep tabs on them. And so I would
have if they didn't ask for my address. On the other
hand, I've been meaning to get a post office box for a
long time.

Still not convinced that this whole project is anti-
vaccine, not pro-freedom or pro-safe vaccine? Check out
this flourish at the end:

    "Barbara and I know that freedom is not free," said
    Dr. Mercola. "We need to organize and raise millions
    to fight Big Pharma and Corporate Medicine. We must
    fight the forced vaccination lobby that wants to
    enslave us and make us buy and use more and more
    vaccines so drug company stockholders make bigger
    and bigger profits. I have selected NVIC as one of
    my favorite charities because I want to win this war
    against forced vaccination in America."

Oh, goody. The NVIC and Joe Mercola, two crappy woos
that taste crappy together--and endanger our children as
well.

It turns out, though, that Barbara Loe Fisher and Joe
Mercola aren't the only anti-vaccine loons getting in on
the act. SafeMinds has apparently decided to break out a
new anti-vaccine propaganda effort to persuade people
not to be vaccinated against influenza this year. As
Autism News Beat points out, now that the election is
over, vaccine rejectionists are calling for a "fresh
start" in persuading legislators to pass antivax-
friendly laws. Besides having produced a new brochure
and trying to get its followers to contact their
legislators, SafeMinds is trying to raise money to show
this video (among others) in movie theaters during the
holiday season:

Note the intentionally inflammatory juxtaposition of
images of pregnant women with toxic waste dumps, the
implication being that injecting pregnant women with the
flu vaccine is the equivalent to injecting them with
toxic waste. SafeMinds makes a big deal over a claim
that thimerosal can't be disposed of in a landfill.
Actually, lots of drugs and medical waste can't be
disposed of in a landfill either. There are special
landfills for them. The utter intellectual dishonesty
and sheer, neuron-apoptosing stupidity behind these
images makes baby Jesus weep. Sure, they say in the ad
dthat they only want to tell you "not to take the risk"
and to demand "mercury-free" vaccines, but in reality,
this is of a piece with SafeMinds' general anti-vaccine
stance. This is made plain in a followup video SafeMinds
released the other day. If the first video was the
media-friendly mild plea, this one goes full-on
conspiracy-mongering anti-vax crazy:

Let's see. Voice of doom narrator? Check. Montage of
mainstream media and blogs arguing against SafeMinds as
though in a conspiracy? Check. The narrator intones
ominously, "Listen to mainstream science and the media,
and you might think the vaccine-autism debate is over
and done with. The 'vaccines don't cause autism'
drumbeat is steady."

Why, yes. Yes it is. From a scientific standpoint, the
vaccine-autism "debate" (in reality a manufactroversy or
pseudodebate) is over and done with. It has been for a
long time. In fact, even though I've criticized her for
being a little careless with her facts from time to
time, I really liked one of the clips in the video
featuring Dr. Nancy Snyderman. In it Dr. Snyderman
repeatedly and aggressively slapped down the annoying
Matt Lauer when he kept referring to the vaccine-autism
link as "controversial," telling him (quite correctly)
it is not controversial--because it isn't controversial
among scientists and physicians. As I'm wont to say from
time to time, from a scientific standpoint, the vaccine-
autism hypothesis is pining for the fjords. It's passed
on! This hypothesis is no more! It has ceased to be!
It's expired and gone to meet its maker! It's a stiff!
Bereft of life, it rests in peace! (Except that it
doesn't; it's a zombie that keeps rising from the dead.)
Its metabolic processes are now history! It's kicked the
bucket, it's shuffled off its mortal coil, run down the
curtain and joined the bleedin' choir invisible!!

It is an ex-hypothesis, and, yes, I do so love Monty
Python's Dead Parrot Sketch.

The room temperature nature and lack of scientific
metabolic activity of the vaccine-autism hypothesis
don't stop Bernadine Healy, though. How predictable.
Ever since Bernadine Healy went over to the dark side in
order to become Age of Autism's Person of the Year for
2008 for her increasing flirtation with the anti-vaccine
movement, she's become the go-to woman for anti-vaccine
crankery. I've discussed Healy on more than one occasion
here; I don't feel an obligation to discuss her again
other than to point out that she's become a hack of
late. But because she was the Director of the NIH back
in the 1990s, she's the best friends anti-vaccine loons
could ever have because she grants them the patina of
scientific respectability. In fact, she's the first
person shown after the voice of doom intones that "not
all scientists agree." Just as creationists and global
warming denialists trot out scientists with no
experience or training in evolution or climate science
to attack the scientific consensus, SafeMinds trots out
Bernadine Healy when the need arises, as it apparently
did here. Elsewhere, it'll trot out Boyd Haley and other
scientists from unrelated disciplines.

While viewing this video, like Autism News Beat, I felt
as though I were taking a trip down memory lane to
peruse the anti-vaccine movement's greatest hits. It's
all there, the rebranding of autism as a mitochondrial
disease in the Hannah Poling case, the Bailey Banks
case, claims that the government has compensated
children for vaccine-induced autism, and a number of
anti-vaccine tropes. Given that Autism News Beat has
refuted each of the points in the SafeMinds video, I'll
refer you there. The video concludes with the voice of
doom intoning, "So, as you see, vaccines don't cause
autism, except for when they do." Bravo for the pure
propaganda.

That SafeMinds even had to do this video is rather
telling. Five years ago, which is when I got involved in
refuting the lies of the anti-vaccine movement in a big
way, news coverage of the vaccine-autism manufactroversy
was nearly always credulous, giving far more credence to
the proposed link than the science would indicate.
SafeMinds and other anti-vaccine groups were given
prominent coverage; even J.B Handley appeared regularly
on TV and radio. Over the last year or two, I've noticed
a welcome new trend in that the media is actually
starting to demonstrate a bit of skepticism and, far
more often than I can recall, getting the story right.
Most likely this is because of outbreaks of vaccine-
preventable diseases in populations with low vaccine
uptake coupled with a continual drumbeat of scientific
studies that have asked the question whether vaccines
are associated with an increased risk of autism and come
up with a resounding "No!" as the answer.

Even so, the question remains: How do we combat the
problem of anti-vaccine propaganda. I came across an
possibly depressing example of how badly we do it from
Jason Goldman, who in a post entitled Vaccination,
Confirmation Bias, and Knowing Your Audience described
an event at GlaxoSmithKline's headquarters about
vaccination:

    For a corporation that depends on communicating
    science to the public, they did a terrible job of
    it! For a certified card-carrying data-whore like
    myself, the Powerpoint presentations (which broke
    every. single. rule. of effective presentations. I
    highly recommend that they hire my friend Les Posen
    to teach them how to present properly) did not have
    enough detail. They would present some statistic,
    but without the level of detail required for me to
    make any real sense of the data. I will grant that I
    was not the intended audience of the talk, so I will
    forgive them their lack of error bars and missing p-
    values. For a general audience without a scientific
    data-driven background, the presentation was even
    more useless! It was all statistics, bar graphs, and
    numbers. If you're going to communicate science to a
    general audience (and I'd like to think that I know
    a thing or two about communicating science to a
    general audience), you need to engage them
    emotionally. You need to tell a story, not drown
    them in statistics. The presenter might say
    something like, "Last year, three gazillion people
    died because they were not vaccinated against a
    Terrible Disease That Kills People In Gruesome Ways
    But Which We Could Eradicate In Less Than A Decade
    If Everyone Would Just Get Vaccinated." Everyone
    would agree that this is a Bad Thing, at least. More
    likely, it is a Terrible, Horrible, No Good, Very
    Bad Thing.

    [...]

    Giving us incidence and death rates and other such
    statistics doesn't really get the job done. It
    doesn't communicate what they want it to. Nor will
    glossy pamphlets (like the one they gave me)
    featuring Mia Hamm telling us to get vaccinated.
    What will get the job done is story-telling,
    appealing to emotion, and utilizing accessible
    analogies. Instead of telling us how many gazillions
    died last year, tell us how many airplanes full of
    people, or how many football stadiums full of people
    died last year.

The GSK corporate blog also provides an account of the
visit, as do Nutgraf and Scrutiny by the Masses. Nutgraf
emphasizes the technical aspect of vaccine production,
in particular the absolute cleanliness required as does
Mom to the Screaming Masses. Apparently last year GSK
arranged a similar program.

As I thought about the NVIC initiative and the SafeMinds
video propaganda program, these efforts by GSK seemed
completely ineffectual for the very reasons that Jason
outlined, but more than that. First of all, you have to
consider the messenger. To anti-vaccine parents,
pharmaceutical companies like GSK are Satan incarnate.
No matter how much a company like GSK tries, it's
unlikely to be trusted because, in the view of the anti-
vaccine movement, it's only in it for the money and it's
the entity that caused their children's autism. I
understand why GSK might have wanted to try anyway, but
in reality it is the worst possible messenger, no matter
how good it is at PR (and apparently it wasn't that
good). Put a sympathetic mother up against a
pharmaceutical company for PR purposes, and the
pharmaceutical company will lose every time. Worse,
bloggers who accept trips like this risk being painted
as in the thrall of big pharma.

Yet, at the same time, I really don't like Jason's
solution, either. I understand that appealing to
emotions is important, but matching the anti-vaccine
movement story for story is a game that scientists are
likely to lose at. We are constrained by the facts; the
anti-vaccine movement is not. We feel vaguely dirtied by
using manipulative stories the same way the anti-vaccine
movement; that is to our credit. Yet, there's no denying
that such methods can be extremely effective. There has
to be a mix that provides the human impact, the
emotional hook, necessary to combat the blatant
emotionality of the anti-vaccine movement, but without
betraying scientific accuracy. I just don't know what
that balance is. I wish I did, but I don't.

So in the meantime, I soldier on in my own little way,
hoping that my efforts have an effect.

___________________________________________

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