Thursday, January 6, 2011

A Harsh Reality: Wakefield and Medical/Scientific Fraud

If you are a regular reader of this somewhat irregularly updated blog, you probably have already heard the news. Andrew Wakefield, whose 1998 Lancet paper was fully retracted, has now been accused of fraud. Investigative journalist, Brian Deer, wrote a rather lengthy piece for the British Medical Journal detailing the evidence of fraud committed by Wakefield. I won't go into a detailed analysis here, since it has already been covered at Respectful Insolence, Bad Astronomy, Left Brain/Right Brain, Just the Vax and elsewhere. The story has been broadcast on local news stations, as well as on CNN and Fox News. There is plenty of reading out there for those who are interested.

Instead, I'm going to take a somewhat different approach. I'm interested in what Wakefield's supporters will do now.

I found myself wondering how I might react, if I had believed Wakefield's claims and protestations of innocence after the GMC hearings that stripped Wakefield of his license to practice medicine (PDF) in the U.K.

Now, if I were a die-hard supporter of Saint Andy, believing that he could do no wrong, I would be very tempted to just write off Deer's article as one more in the long list of "hit" pieces against my hero. How would I rationalize this? Well, perhaps by thinking that Deer made up his evidence or that important details were left out, as Wakefield himself suggests. This would be hard, though, since Deer provides copious details and references for his claims. And even if some details were left out, there are still huge questions remaining as to why certain key facts that were crucial to Wakefield's hypothesis were changed support that hypothesis when they originally did not. Facts, verifiable by the medical records, like several of the children in the 1998 study showing signs of behavioral problems and/or autism before they received their first MMR shot. The amount of self-deception that would be needed to continue to support Wakefield after this, without question, would be enormous. The only thing I can think of is that people holding this delusion are just in the "denial" phase of grieving. The optimist in me thinks that they will eventually pass out of this phase and accept the truth. The realist in me isn't sure.

For those who don't descend into denial, they must surely feel some sense of betrayal. Again, trying to imagine the emotions and thoughts that might go through their minds, I can certainly see a rejection of Wakefield; there may be a desire to distance themselves from him and his work. Whether they would still blame vaccines for their child's autism or not is an entirely different matter. This group could probably be broken down into at least two sub-groups: those who finally accept that the vaccine hypothesis is dead and those who don't.

Starting with the latter, Wakefield's disgrace may cause them to shift to other studies that purport to show a link between MMR and autism, or they may drop the MMR bit altogether (as many have already) and focus on the other vaccines. A lot of the "too many, too soon" folks would probably fall into this group. "So what if Wakefield was a fraud? These other vaccines (or their ingredients) are to blame!" So may run the rationalization, despite evidence to the contrary.

Then there are those who come to the realization that it isn't the vaccines at all. These are the people that I imagine will have the hardest time with the news of Wakefield's alleged fraud. Why? Because, if it isn't the MMR, if it isn't the vaccines, then most likely the cause of their child's autism is most likely genetic. Their genes. Them. That has to be a difficult demon to face. Even though their genetics are entirely beyond there control, there is a level of guilt there. Even though it isn't true, they may think, "I'm responsible."

And I think that may be one of the biggest motives to reject this new evidence against Wakefield. No one wants to be wrong, certainly, but even more, I think, no one wants to bear even a suggestion of responsibility for a negative impact on the health of someone they love. To be clear, the parents of children with autism are not responsible for their children having autism; the origin of their child's autism is something completely beyond their control.

To make matters worse, a lot of these parents have become friends with a lot of other parents in the same circles, others who share (or shared) their belief that vaccines were to blame. If they reject that notion, they risk becoming outcasts from people that they have formed friendships with. That also cannot be easy. Being ostracized, cut off, is hard. And it does happen, as can likely be attested to by Kev Leitch at Left Brain/Right Brain or Kim Wombles at Countering, both of whom used to be accepted by folks like Age of Autism but are now virtually pariahs in those circles. There is loneliness, a sense of loss. Where do you turn for a shoulder to cry on? When you're having a bad day, those people who once accepted you are no longer there to offer the same (if any) support. Who do you talk to when you're having rough times? I went through a lot of these feelings, myself, when I left my former religious beliefs. It is very hard, and building a new support structure can be very draining.

If anyone is reading this who does feel betrayed by Wakefield and who does worry about where they can go for support, there are people out there who will listen. Get in touch with Autism Science Foundation. Reach out to any of the blogs I listed above. If you're in the Boston area, get in touch with the Lurie Family Autism Center. Heck, send me an e-mail. I'm no psychologist or counselor, but I am willing to listen and, if desired, offer advice. Sometimes it is enough to just talk out your feelings to an open ear.

It remains to be seen whether formal charges of fraud will be brought against Wakefield, but the situation for him does not look good. Perhaps now, though, the focus can shift to finding the real causes of autism and providing better support for autistic individuals and their families.

6 comments:

  1. Have you been over to AoA lately? The commenters are becoming unhinged, to say the least. They are accusing Brian Deer of being "creepy" and "obsessed" with Andy. Yet they don't seem to think that JB or StagMom are in any way creepily obsessed with Dr. Offit. Hmmm?

    Someone over at "Insolence" wrote and is right: AoA will re-write history as soon as this blows over. They'll deny their savior before some pre-determined measurement of time based on the noise of an animal.

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  2. I haven't ventured over there. I'm not surprised that there would be a lot of anger right now. As I wrote, I think that people will slowly drift into one of the categories I discussed (or even some others). But, yeah, the whole "obsessed" charge goes both ways. When it's "your" side that sticks to it, it's simply perseverance and fortitude. When it's "Them", then it's creepy and obsessive. Now, Brian Deer, in his postings on various blogs, kinda irks me. He strikes me as a bit pompous, but that's just my feelings from how he writes. Doesn't change the facts that he's found, though, nor the quality of his articles for the Times.

    What it comes down to is, what are the verifiable facts; what's the evidence?

    And, yeah, I wouldn't put it past the AoA editors to quietly expunge any evidence of supporting Wakefield from their archives, except where it might benefit (one wonders how it would benefit) their anti-vaccine goals.

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  3. My IRL friend Shannon Rosa, whose middle child has intense autism, wrote this at BlogHer yesterday


    With criticism flying fast and thick in both directions, there is one thing we all need to remember when speaking to parents who still believe their child's autism was caused by vaccines: those people are in real pain. They want answers and need support. They are likely not getting either, except through the anti-vaccination movement's mostly negativity-filled channels, which is why they become so entrenched and remain in denial. But they are also the ones responsible for the upbringing of a child with autism. We need to be mindful of those children, and help their parents gravitate towards towards positive communities and attitudes, plus parent and adult autistic role models. I admire Hopeful Parents, and also helped found The Thinking Person's Guide to Autism for this specific purpose.


    The other point that is being obscured here: not all parents of children with autism -- no matter how intense or mild -- believe in the vaccine causation hypothesis. Some might be like Shannon, who used to believe in the vaccine theory but as she said "recovered her rational mind". Others never believed. And many adults with autism also never believed.

    Kev Leitch, the parent of a child with intense autism, has a passionate post up discussing the impact of Wakefield's fraud -- it has harmed people with autism because it has sucked time, money and attention away from useful research and useful investment into social supports.

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  4. @Liz

    Thanks for sharing. Very important to keep in mind that while we may be angry with the leaders/instigators of the anti-vaccine movement, the parents who have been taken in by them deserve our compassion and respectful discourse.

    As I said in my post, if anyone did believe Wakefield and needs someone to talk to, I and others are quite willing to lend an ear.

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  5. Hi Todd, I just tried to post a comment on this AoA thread: http://www.ageofautism.com/2011/01/autism-advocacy-organizations-and-parent-groups-support-dr-andrew-wakefield.html#comments

    But they have blocked me. This is the comment:

    "@Estellea - you are right that independent research is of utmost importance, but that also applies to research independent of big pharma influence"

    @ Ann, I won't argue with that. However, if research that is 'tainted' with pharmaceutical association can be verified with outside sources or findings independently replicated, then that is not problematic. But let's not have a double-standard here; pharma ghost-writing is fraudulent, alteration of clinical trial results is fraudulent, non-publication of medically-relevant data is also fraudulent. Just as altering children's medical histories and clinical results to obtain pre-ordained results is fraudulent.


    It's hard to feel sorry for people who are wilfully delusional and dishonest. These people aren't merely sucked in by the vaccine-autism crowd, they fight to stay entrenched there.

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  6. @Anonymous

    Thanks for sharing. I started a new thread to take comments on that article. Please copy your post over there, along with the approximate date/time you posted.

    ReplyDelete

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