Thursday, February 25, 2010

In Response to Ven Sequenzia

I recently came across this petition, which states that the Brittish GMC's "persecution" of Dr. Andrew Wakefield is "akin to the persecution of Semmelweis." I also noted that signer #1,144, who left a rather long and rambling comment, was a Mr. Ven Sequenzia (assuming, of course, that he is not an impersonator).

I wouldn't normally respond to such, considering, but I happen to know Mr. Sequenzia, both by reputation and in person. He is, after all, the president of Florida's branch of the Autism Society of America.

Of course, the very fact that Mr. Sequenzia signed a petition of this sort is a problem. His comment was more of one. As such, I'm going to branch out somewhat and write a reply of the sort used by some of my fellow bloggers.

I met Dr. Wakefield several years ago and also listened to him testify to Congress, read some of his research and felt that there was something there that could affect or impact some children on the autism spectrum. While I understand there is a feeling from the medical community that anyone who questions the medical establishment is a nut case or is trying to insight panic, I get the sinking feeling that the medical establishment is doing the same thing here.
Umm... no. First off, there's a long tradition -- within the medical establishment -- of questioning established belief. It's called "science".

Questioning established beliefs -- and testing them to see if the evidence supports them or not -- is the bread and butter of science. Questioning the way you go about this and trying to find better processes for testing your beliefs is also a very large part of the scientific process.

Of course, like everything else, science has rules. A very large part of the matter is the fact that Wakefield didn't follow them.

I respect that there is a question of research and how it is accomplished. I also respect that there are several medical professionals that believe they are right. That doesn't mean they actually are right. The biggest problem with autism, the medical community and families dealing with it, is the need for everyone to be right. The problem is, there is no right or wrong. There is only what you and your child or adult with autism has to live with every day, what you can do to address how it affects your family and how to treat the issues that arise.

Umm... no. To throw out a few examples: if you chemically castrate a child in the name of pseudoscience, that is wrong. If you falsify data and violate the Nuremberg Code in the name of personal financial gain, killing countless children in the process, that is wrong.

This, of course, is in the moral and ethical sense. The factual sense is a great deal more straight-forward... and every bit as complicated in its own way.

Sure, there are treatments that help some. There are also treatments that harm some. I am all for making sure that families don’t get harmed and don’t subject their child with unnecessary treatments.
Yes, and how do you know what really helps and harms? That's the real question -- and people are horrendously bad at answering it. Science, as a whole, is built around methods to compensate for the various things which mislead and deceive us. Ignoring the "rules" of science (which do allow you to "break" a number of the "rules" -- provided you can justify doing so -- and remain within the bounds of good scientific practice) means letting these various biases creep back in.

In medicine, where the costs of false beliefs are often measured in millions of dollars and thousands of lives, good science is especially important and fraud is especially costly. This is a large part of why Wakefield is so hated by many people.

What I don’t understand is how many children have been harmed by Dr. Wakefield’s research?
The short answer is "thousands". Wakefield's academic fraud single-handedly caused a series of major outbreaks of vaccine-preventable disease within Brittan. The anti-vaccine movement which he brought back to prominence has already caused many more such outbreaks. Here is a small sampling of relevant documentation.

On top of that, there's the matter of the children Wakefield harmed directly. While the absolute magnitude of harm may pale next to the above, these children were Wakefield's direct responsibility -- often entrusted into his care as a physician. It is difficult to explain the sheer magnitude of misconduct represented by a physician ordering a medically unnecessary colonoscopy and lumbar puncture of a patient under his care for research purposes. It becomes difficult to even contemplate the sheer magnitude of misconduct and irresponsibility involved when a physician also fails to get approval from the relevant ethics committees and informed consent. It's a clear violation of pretty much any of the relevant medical ethics codes and constitutes the committing exact same violations that Josef Mengele was famously guilty of... and then some.

Of course, this disregards things like the stigma created by the anti-vaccine movement and the resources needlessly spent countering Wakefield's efforts to undermine the world's disease prevention programs. Factoring them in only makes things a great deal worse.

How many have been helped by it? How many children are better because of it? Has anyone from the medical establishment studied that? I doubt it. If so, please get me the information.
I would argue that the answer to this is "none", but the truth is rarely that simple. Sheer serendipity means that some children have benefited from the increased attention on gastrointestinal issues in autistic children, for example, and I'm pretty sure that Wakefield's fraud has been generally beneficial to the college funds of the children of DAN doctors.
The concern I have is how the medical community is always looking for ways to prove someone else wrong. Isn’t the purpose of medicine to treat an individuals’ health issue and provide support to the family dealing with that issue?
To an extent -- although the most of findings against Dr. Wakefield have to do with his practice of medical science, not medicine per se. The purpose of medical science is to find out what is and is not true as well as what does and does not work.

This said, I would like to point out that the findings against him include him ordering unnecessary (and not clinically indicated) invasive, dangerous, and risky medical procedures for research purposes. In other words, he hurt and risked the lives of patients under his care for no benefit to them. He also lied to their families, claiming that certain procedures were "routine" when they were anything but.

If so, then why is everyone so polarized about the possibility that something could contribute to helping these children be in less discomfort?
"Because some people understand science and others don't," is the short answer. Those of us do realize that the vast, vast majority of promising new treatments -- for anything -- don't pan out. As most treatments involve substantial risks and notable side-effects, this means that using an untested treatment outside a formal research protocol (and sometimes even then) is flat-out irresponsible.
There are 1 million opinions about what autism is, what it isn't, what caused it, what doesn't cause it, how to treat it, how not to treat it, etc., etc. These opinions come from medical experts, parents, individuals living on the spectrum and everyone in between.
Yes, and in as far as many of these deal with facts, most of them are wrong. Any decent scientist knows this. That is why claims need to have evidence behind them, why we focus our investigations on those most likely to be true. When scientists have to divert their energies to investigating those theories without good evidence behind them, we all suffer. Nothing beyond a basic understanding of probability and game theory is required to understand that.

I know that when my daughter was diagnosed the number was 1 in 2,000 (girls). Now it is 1 in 91. I few years ago I was at a conference and I spoke to a respected expert on autism from northeast. This expert vehemently denied that there was any increase in the number of cases of autism. This doctor stated it was purely “better diagnosis and medical professionals looking for the signs”. This same doctor and many others have now retracted that position and admit there are more cases and something must be contributing to it, including the environment.
You're forgetting changes in diagnostic criteria and their practical implications. There may have been a true increase in the "real" autism rate over the last few decades, but all evidence is that if there has been one, it's been tiny, and not at all as significant as you are trying to portray.

Several years ago there was a communication method that was discovered in Australia called Facilitated Communication (FC). A professor from New York brought it to the US. There was much excitement about the prospects of a new communication method for individuals with autism. Many non-verbal individuals with autism started to communicate for the first time in their lives. Some stopped having tantrums, some started to relate to their environment better, some even started to speak for the first time. It is believed that many of these non-verbal individuals were intelligent, but their disabilities (autism) was hindering us from seeing through the behaviors and actually believe that these people had a new way to communicate. Well, the medical establishment was afraid of the ramifications of such a possibility and started demanding double blind studies, etc.
Umm... no. Scientific methodology requires that claims be substantiated. The proponents of facilitated communication made extraordinary claims about the efficacy of their intervention. If it actually worked -- and they'd had the evidence to back them up -- this wouldn't have been a problem. They did not, however, have this evidence.

For a while, it appeared that facilitated communication did indeed work. Realizing that a very large number of things could make an intervention appear effective when it really wasn't, however, scientists investigated.

An ineffective intervention -- even if it appears effective -- is merely a waste of time and resources. It is generally considered unethical to use an intervention which is known to not work. More than that, however, was at stake with facilitated communication, as you noted yourself in your next sentence.
The fact that these children stopped tantruming or communicated that some individuals were abusing them both physically and sexually made the medical community even more concerned.
The very fact that such accusations existed made determining the reliability of facilitated communication even more critical. If the accusations were true, any weakness in the evidence supporting facilitated communication could have been used to help the guilty parties get away with their crimes. If facilitated communication did not work, however, then these accusations were by and large false... and innocent men and women were being accused of things they did not do.

As it turned out, facilitated communication didn't work. While the facilitators believed it did, the vast majority of the "successes" of facilitated communication really depended on something called the ideomotor reflex. Facilitators were essentially using the children's hands as pointers on a Ouija board.

This was not a new problem, either. The parallels with the repressed memory debacle, just to throw out one example, are striking.

Of course, there is no proof that it didn't work in all cases -- it's quite likely that it did in some. The more fundamental problem, however, was that the facilitators couldn't tell whether it was working or not, tending to think that it was working when it really wasn't. This, in turn, lead to the "fall" of facilitated communication.

It's a shame, in many ways, that this happened. The philosophic base of facilitated communication was far better in a lot of key respects than the philosophic bases of most autism interventions.
They couldn’t believe that non-verbal, beautiful children (and adults) could possibly be the target of such abuse. They also were so concerned about these children, that they made it their mission to disprove the communication method entirely, without allowing time for further investigation or time to work with the individuals communicating to see if maybe there was anecdotal evidence of it being a reality.
No, they conducted that further investigation, as per the rules of science. Contrary to your insinuations, good experimental design does not consist of ensuring that an intervention cannot pass the examination. It consists of ensuring that tests are as fair and thorough as realistically possible.

Anecdotal evidence is subject to all sorts of bias, ranging from selection bias to expectancy effects. This is why few scientists trust it or view it as reliable.
No, we had o subject these people to testing and blocking the facilitator from knowing anything and disprove the possibility of it being real, because it would have thrown out 50 years of thinking that people like my daughter had an IQ of 35. The medical professionals that test IQ even admit that the standard tests aren’t valid for autism in many cases. The sad part is no one who was associated with FC claimed it was a cure. No one claimed it to be anything more than a communication method for some individuals on the autism spectrum.
That is what was tested, but that was only part of what was claimed.
Today, Amanda Baggs who has autism communicates through typing independently and she started out using FC.
The question is whether she learned to communicate because of FC or despite of it. Another part of the problem is whether what they had could properly be called "facilitated communication", as I've seen several descriptions which most certainly don't match what the peer-reviewed literature describes. I could discuss this for quite a while longer, but I do not see what the FC debacle has to do with Wakefield's misconduct and fraud.
The odd part is that medical establishment says she never used FC or that she is not communicating herself, even though she does it independently.
Umm... no. I won't deny that elements within the clinical establishment say this, but this sort of blanket statement is a drastic mischaracterization of the clinical and medical establishments.

Does this sound at all familiar to the current situation with Dr. Wakefield?

Obviously, we are talking about completely different issues, but the same medical community that challenged FC challenges every possible thing that could upset the “established thinking” because they care about you and I and our children on the spectrum.
Umm... no. Again, the medical and scientific communities challenge every novel claim because science is the testing of claims.

I do believe they care, but I think they care more about being right then about being open minded to other possibilities. The scientific community spends their entire life trying to disprove things.
Umm... no. As I've written above, science is about testing things. As such, scientific claims are tested. This is very close to tautology.
The interesting part of all this is the fact that many believed to be on the autism spectrum are some of the brightest people on the planet - Einstein, Bill Gates, Temple Grandin, etc. People thought Einstein was crazy at the time. It is a normal reaction to try and disprove things.
Put bluntly, you are confusing burden of proof and assimilation bias... and the way you are defending a "doctor" who deliberately risked the lives of his patients for personal gain is disgusting.

It is our nature to be that way. Individuals with autism and their families deserve every opportunity to investigate anything that can help them to become more productive and happier citizens.
They also deserve accurate information and good ethics. The irony here is overwhelming.
If a child has a gut problem and eating a different diet can help, then why shouldn’t they have that? If there is a chance that one child is affected negatively by a vaccine, an environmental insult, a dose of antibiotics, etc. shouldn’t we be able to question the establishment and where appropriate provide remedies to address the problem?
If the child really does have a gut problem, then yes, that's accurate. If the child's parents are being lied to and told that the child has a gut problem when he really doesn't, that's another matter.

Similarly, the whole vaccine thing has been thoroughly investigated. It's not what's going on. Get over with it and move on.
Isn’t it our duty as citizens and parents to question the powers that be and when we think there is a problem to question it? I am not a conspiracy theorist, but the current climate sure seems to be one of covering up, diverting attention and condemning anyone who questions the status quo.
It certainly is such in anti-vaccination circles. In scientific circles, it's only condemning of those who break the rules of science in the name thereof (e.g. Wakefield).

As for parents -- note above. They, like autistic individuals themselves, deserve accurate information and good ethics. The scientific process is designed to produce the former. Many of the findings against Wakefield include bypassing safeguards designed to ensure the latter.
Yes, there are many who try to capitalize off of the less fortunate and parents and individuals with autism are targets for this. I understand that the medical community feels it has to protect us from everything, but we are intelligent people and I am tired of the condescending attitude that prevails in the medical community.
Intelligence doesn't assure good critical thinking skills. Jenny McCarthy and her followers illustrate this pretty spectacularly at times.

I also suggest that you start to learn about medical bioethics. Frankly, your comments show a startling ignorance of the subject.

We have rights, we have free will, we can read, we can judge for ourselves.
Well, yes. The same can be said of us (ie. autistic individuals). Doctors are well aware of this -- that is the reason why there is a requirement for informed consent which is pretty thoroughly enshrined in medical bioethics.

Allow us the opportunity to challenge your opinions, no matter how many letters you have after your name. Allow us to question your motives as well.
Science is all about this. Again, as stated before -- there are rules to science. Learn them. Follow them. Then, and only then, will your criticism make sense to doctors.
If I didn’t challenge the school system about my daughter’s needs, she would be in a much different place today. If I didn’t challenge the notion that she had the ability to communicate, she would be in a much worse place today. The sad part is, the reason people believe what I say is because of who I am, not because it is true or false. It is unfortunate, because so many more could be in a better place, if people believed in them too.
This is a pretty blatant red herring argument. School personnel aren't medical personnel, and the school system's attitudes and actions are not those of the medical establishment.

That said, I'm neither saying that doctors are perfect, nor that there isn't room for improvement in how things are done. Giving credit where credit is due and assigning blame where it belongs, however, are basic principles of ethical behavior. Medical doctors no more deserve the blame for the school system's misbehavior than my sixth-grade math teacher deserves the blame for the abuse I suffered in high school.

Your long, rambling, and incoherent defense of a monstrously irresponsible clinician and a spectacular academic fraud, however, is simply disgusting on multiple levels. Please -- study the issue more before you commit like this. As is, your actions are likely to cause more harm than good.

Edit: I just ran across this interview excerpt, which deals with a lot of the scientific issues I'm talking about above in a manner far better than I ever could. Read. Enjoy, too -- it's utterly hilarious in addition to being absolutely right.


  1. Semmelweis was the guy who discovered germs and made the public health recommendation that doctors and the rest of us wash our hands every time we go to the toilet and after we eat.

  2. Not quite, but close. Semmelweis was the one who discovered that washing hands kept people from getting sick, but he never quite made the leap to germ theory. It wasn't until Pasteur made that discovery that people took Semmelweis's reccommendations seriously... and, in the mean time, Semmelweis was ridiculed so severely for his discovery and reccommendations that he... well... suffice it to say that his death is usually blamed on the ridicule.

    Alternately, of course, you could just follow the biographical link I provided on him above. :-)