I have been thinking about this issue, and this post, for several days now, since a friend who is a science blogger sent on an email from the British Medical Journal (BMJ) about yesterday's revelations alleging Andrew Wakefield's fraud. I couldn't speak or write about it, as the BMJ had strongly requested that the story not be made public ("embargoed") until 4 pm January 5 2001 PST.
That email had links to the full text of editorial, article, and references revealed yesterday. As I studied the material and references, one of the things that I kept in mind was the community that has grown up here at The Thinking Person's Guide to Autism, and how we have managed to keep talking through differences of points of view and of opinion. I treasure that continued conversation and I believe it is one of the most valuable things we have accomplished here.
I thought back to our founding principles and vision
Why We Are Doing ThisThere are parents of children with autism (and a few adults with autism) who ardently and sincerely believe that vaccines somehow are implicated in autism. However, the evidence continues to mount exonerating vaccines. But my fellow editor, Shannon Rosa, said it most eloquently:
The Thinking Person's Guide to Autism (TPGA) is the book and website we wish had been available when our children with autism were first diagnosed.
Autism misinformation clouds and is perpetuated by the Internet. We want to make accurate information about autism causation and therapies visible, accessible, and centralized.
Our attitude is cautionary yet loving -- we're not interested in negativity. Our families need their energies for evidence-based optimism!
How We See Ourselves
Think of us as a little bit of Snopes for the autism community -- trusted, accurate, and friendly. Our essays will cover informed approaches to autism and autism treatments, as well as the personal experiences of people with autism and their families.
...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.
A Brief Summary of the Wakefield Story
In 1998, Andrew Wakefield and 12 co-authors published a modest paper, Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The paper itself is modest, but Wakefield used the paper's publication to cast fear and doubt about the safety of the combined measles-mumps-rubella (MMR) vaccine. Upon discovering that Wakefield did not disclose payments from a law firm to underwrite some of the research, in 2004 ten of the 12 co-authors renounced the study. Following an investigation by journalist Brian Deer, in 2007 the British General Medical Council (GMC) launched an investigation. In January 2010, the GMC ruled against Wakefield on all the charges. In February 2010, The Lancet withdrew the paper. On 24 May 2010 he was struck off the United Kingdom medical register.
Following the GMC ruling, Brian Deer had access to the entire file generated, some 6 million words, and published a series of reports on data irregularities in Wakefield's work. On January 6, the British Medical Journal published an editorial and article that charged Wakefield with outright fraud.
There has massive media coverage of the British Medical Journal's editorial and article. The voices not represented, however, are adults with autism and parents of children with autism who do not subscribe to the vaccine-autism causation theory.
Responses from parents of children with autism and adults with autism who reject the MMR or vaccine causation theory
The most thorough overall coverage of the story has been from Sullivan at LeftBrain/RightBrain. Posts in order:
- The British Medical Journal (BMJ) Press Release: There is "No Doubt" that it was Wakefield who perpetrated this fraud
- BMJ Editorial: Wakefield's article linking MMR vaccineand autism was fraudulent
- Brian Deer in the BMJ: How the case against the MMR vaccine was fixed
- The National Autism Association Tries and Fails to Defend Andrew Wakefield's Fraud
- Journalist: US should probe Wakefield
- Andrew Wakefield on CNN
- Andrew Wakefield on CNN: The last gasps of a desperate man
- JB Handley of Generation Rescue on CNN
- Brian Deer on CNN responds to Andrew Wakefield's Wild Charges
- Seth Mnookin responds to Andrew Wakefield on CNN
- You can't question vaccines without being destroyed...or can you?
Many have long been skeptical about the connection between autism and childhood vaccinations, but to learn that a researcher had consciously altered facts in his report is horrific. It makes this blogger want to spew flames of hate in his general direction.
How many families held back from immunizing their children out of fear? How many medieval diseases were spread? Deaths certainly resulted from these lies. This fraudulent research may have also distracted parents from providing their children with useful therapy and gave them a false cause for their children's condition.
Prometheus at Photon in the Darkness: The Final Curtain
Along with the sadness I feel watching Dr. Wakefield’s self-destruction, I also feel a certain anger, and not just for the families he misled or his statements about the MMR vaccine. One of the many “unintended consequences” of Dr. Wakefield’s foray into autism research has been to poison the well of autism research. Reputable researchers now hesitate to work on autism because it has become such a polarised field. Even among those who do brave the shark-infested waters, there are certain topics - such as infectious causes of autism - that Dr. Wakefield (and, to be fair, others) has rendered toxic. Nobody wants to research an area where, no matter what you find, people will howl that you are corrupt, a fraud or a crank.
Dr Manny Alvarez at Fox News: Stop lying about the autism-vaccine "link"
Now, to find out that Dr. Wakefield’s research was an “elaborate fraud,” with alleged financial motives, hurts me more than anything.
In my opinion, scientific fraud is one of the most lethal crimes that any person can commit. I’ve said it before and I’ll say it again. Doctors take an oath of “do no harm.” And for a doctor to knowingly publish fraudulent “data” to support bogus claims for personal and professional gain is disgusting.
I feel angry, but more importantly I feel sad, not only for my Ryan, but for the millions children and their families that are still searching for answers.
I have no doubt that understanding autism and its roots will be identified in the near future. Hopefully, not by doctors like Wakefield, but by doctors who are really looking out for our children.
As I find more responses I will add them in the comments.