Generation Rescue: an autism research organization?

1 May

Generation Rescue has been trying to rebrand itself as a “research” based organization over the past year. This is a tough sell given their track record of promiting junk as science. Even if they didn’t keep touting their phone survey it would be difficult to forget it. Rather than write the effort off as bad, they cherry picked the “results” which support their political and public relations agenda.

I was reminded of this while I was writing a review of the Science Advisory Board for the newly minted Autism Science Foundation. Why not do the same for Generation Rescue?

it is worth noting that it would have been impossible to review GR’s science advisory board a year ago. It didn’t exist from what I recall. I recall checking fairly recently, and the advisory board consisted of one person.

But, that was the past. GR is ramping up their Advisory Board. Below is the current Advisory Board for GR. I use the ISI Web of Knowledge database to check for papers with the Science Adviser as “author” and the topic as “autism”, just as I did for the Autism Science Foundation. I also did a few other checks, as you will see.

S. Jill James

I get 11 autism papers for Dr. James papers in the search. One of which was cited 84 times (which is very respectable), but most of which have been cited 1 or 0 times.

I found something interesting on her website. Under “Research Support” she lists, “CDC: Mechanisms of Oxidative Stress in Children.”

I find it amusing that the top science adviser to Generation Rescue is accepting funding from the CDC. Were she on the “other side” of the fence on the vaccine question, GR would certainly have claimed that accepting money from the CDC is a clear indication of bias and would call for “independent” research.

I guess you can be independent and still accept money from the CDC.

Dr. Richard Deth

Dr. Deth was recently discussed by Kev, by the way. He has two autism papers in the ISI database. One of which was cited 31 times.

Woody R. McGinnis, M.D.

I only get 3 papers from the ISI Web of Knowledge database for McGinnis WR and topic=autism. Apparently they aren’t listing his papers in the Journal of Biochemistry and Biotechnology which came out last year.

Jerry Kartzinel, M.D.

I get no hits for an ISI search on papers for Kartzinel as author and subject=autism. He is, of course, the co-author with Jenny McCarthy on her recent book. Not exactly research, though.

This is not a group of heavy hitters in autism research. As noted, Dr. James has a few papers which have been cited a number of times. But, given the nature of this group (and of Generation Rescue) the question has to be asked–is this a real advisory board or is it for show? In general, this is a pretty lightweight group in the autism world. When Jill James is your “heavy hitter” you aren’t going to impress many people who actively watch autism research.

Besides, when has GR ever really acted like they want “scientific advice”? Seriously–they seem to be an organization which thinks scientists exist to confirm the observations of parents.

Compare this Science Advisory Board to that of the Autism Science Foundation, which we recently discussed. GR, an organization that has been around for years, is just putting together their Advisory Board and, well, the effort is slow to get moving. ASF had a reasonable Advisory Board at their launch.

But, Generation Rescue isn’t an organization to let their glass house stop them from throwing stones. You can imagine that when an organization like the Autism Science Foundation comes out with a stance against the vaccine/autism hypothesis it would see some “heat”. True to form, but I admit later than I expected, Kim Stagliano put forth a mild attack. As attacks go, it’s actually sort of amusing. Ms. Stagliano uses as her theme an idea that the ASF is stuck in the past in their approach to research. I find this attack by Ms. Stagliano amusing given Generation Rescue’s approach to research. GR’s concepts of research are like a neaderthal man found in a glacier: they represent ideas frozen in time, and ideas whose evolutionary path led to nowhere. You know the ideas: MMR and thimerosal caused an autism epidemic.

I am left wondering why Generation Rescue doesn’t have Dr. Andrew Wakefield as a science adviser. Certainly if anyone typifies the antiquated stance on science that Generation Rescue holds, it is Andrew Wakefield. GR certainly shows great admiration for the man who fueled the MMR/autism scare in 1998. But, it is one thing to admire the man, it is another thing to add someone to your advisory board whose research is considered an embarrassment by the vast majority of the research community. Who knows, Perhaps Dr. Wakefield turned GR down?

If I may take another minute on Ms. Stagliano’s blog post. She calls in the spectre of the Tobacco companies. It seems to be a favorite contrivance for her and the entire Generation Rescue/Age of Autism crowd. Favorite and patently ridiculous. Here’s what she had to say.

If the American Lung Association had spun off a new group headed up by those with a strong allegiance to Philip Morris and called themselves, INCS (“It’s Not Cigs Stupid!”) would anyone take them seriously outside of those with a financial interest in cigarettes?

The tobacco gambit is a bad comparison to autism from the outset. Epidemiology showed clearly that tobacco causes cancer. The epidemiology on MMR and thimerosal has shown they didn’t cause an “epidemic” of autism.

What takes the tobacco gambit from bad to ridiculous is when, only a few paragraphs later, Ms. Stagilano cites Bernadine Healy. Dr. Healy accepted tobacco company money as part of an organization which denied the dangers of second hand tobacco smoke. One sure sign that Ms. Stagliano’s post is basically propaganda–she refers to Bernadine Healy as “one of the most trusted doctors in America”. Er. Yeah. I would love to poll the “man on the street” and see how many have even heard of Bernadine Healy. Plus, I guess someone can be accept tobacco company money and still be “trusted”? Wll, at least as long as they support the “vaccines might cause autism” concept, eh Ms. Stagliano?

I actually wish Generation Rescue well with their effort to build a Science Advisory Board. I would hope that they would (a) find real scientists and (b) take their advice.

It would be a new direction for Generation Rescue.

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4 Responses to “Generation Rescue: an autism research organization?”

  1. Squillo May 1, 2009 at 20:44 #

    I wonder who the scientific advisors were when they were designing and conducting that public opinion survey they like to call a “study” and “science” on their “14 studies” site? I’d like to hear comments from the newly-minted Science Advisory Board on the quality of that “study.”

    It’s also worth noting that the vaunted Dr. Healy is a cardiologist–not generally one of the specialties associated with autism or vaccine research.

  2. david.andrews.ed.psych May 2, 2009 at 10:33 #

    ” I would hope that they would (a) find real scientists and (b) take their advice.

    It would be a new direction for Generation Rescue.”

    it’ll never happen. they have too much to lose… once the science was in to disconfirm their beliefs, they’d reject the science anyway.

    a scientific advisory board would be bugger all use to them: they really wouldn’t know what to do with one.

  3. My Autism Recovery December 21, 2009 at 16:19 #

    Interesting. I didn’t know Generation Rescue could not really be a trustworthy source of info.

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