After a week of some of the most amazing anti-vaccine craziness that I’ve seen in quite a while, a week that started with anti-vaccine hero Andrew Wakefield’s name being struck off the list of licensed medical practitioners in the U.K. During the entire week, there was (and is ongoing) an anti-vaccine crank conference known as Autism One. By midweek, the anti-vaccine loons had their rally in Grant Park, a perfect storm of crankery in which the “health freedom” movement met the anti-vaccine movement. When Harry Met Sally, it wasn’t. In any case, skeptics, despite short notice, still managed to get a group together to counter the rally.
Autism One still has three days to go, counting today, and I thought I’d make a few observations. First, the most heartening observation is that the anti-vaccine rally, which Age of Autism and Generation Rescue promoted heavily, was basically a huge bust. People who were actually there have been sending me estimates, and, counting the speakers, volunteers, and the anti-vaccine band, the largest estimate of the number of protesters that I’ve seen was around 200. Most estimates were in the 100 to 150 range. Here are some pictures from the rally itself:
The crowd looks rather thin to me, even in pictures posted by Age of Autism. Jerry Witteven described the turnout that he observed at the rally thusly:
At the rally, I estimated under 200 people in attendance, including some news agencies and a documentary film crew. There was a small group of pro-science folks organized by Elyse at Skepchick blog and encouraged by PZ Myers and Orac (I’m sure there were more involved).
I want to be perfectly clear about how small “under 200â³ is. I have gone to some of the most esoteric events in Chicago, ones with far less funding than the anti-vax event had yesterday, and they were far more supported than this pathetic excuse for a rally. If something is popular enough to have a following, Chicago has never disappointed me with a small crowd … until yesterday.
He’s right. I lived in Chicago for three years in the late 1990s. I love Chicago. Lack of a crowd is a rare problem at a Chicago event. Most of the attendance estimates for this rally that I’ve seen or heard from skeptics are between 100-200, including around 30 or 40 “red shirt” volunteers (oh, how I love that they chose red shirts for the volunteer staff). The organizers were clearly expecting a much larger crowd, given the number of volunteers. (After all, what rally needs one volunteer for every four people or so?) They didn’t get it. Not that that will stop anti-vaccine websites from claiming that 1,000 or more showed up. The inflated claims likely to come can go against other accounts from people who were actually there that back up the sad and utterly pathetic nature of the rally. First up, The Skeptical Teacher describing a picture taken with Andrew Wakefield himself:
That’s Wakefield in the middle, unwittingly posing with two of our skeptical ninjas who infiltrated his rally. In fact, the girl is wearing a Surlyramics necklace that says “Hug Me, I’m Vaccinated!” and moments before this snapshot was taken she handed him a note. It said how much of a horrible person he is for spreading anti-vax nonsense and scaring people out of vaccinating their children. She told me that he didn’t look at it & just put it in his pocket, thinking that he got the phone number from some hot young lady. Here is the text of what she wrote:
Dear Andrew Wakefield,
I know that you truly believe that what you are doing is helping people and that the ends justify the means, but I just want you to know that the things you are doing – the actions you have taken in the past have hurt people – killed people. Your work has scared and manipulated parents into not vaccinating their children, putting them and their entire community at risk, all in the name of safety. Children have died because of you. I just want to make sure that you fully understand that.
Andrew Wakefield, completely pwned! Brought a huge smile to my face, that post did!
Next, here’s part of Jamie Bernstein’s account, courtesy of The Friendly Atheist:
Most of the speakers focused on painting a picture of the people who tout vaccines as evil. And, I’m not talking “Glenn Beck evil” here, I mean Hitler/Al Queda evil. In their view, pharmaceutical companies commit blatant fraud, creating horrible, toxic, poisonous substances like vaccines and acetaminophen (yep, Tylenol is EVIL!) and then making up lists of benefits and selling it to the public under the lie that its good for you. And don’t forget the government. Clearly the government is in the pocket of BIG PHARMA (capitalized because every time anyone mentioned BIG PHARMA, it really sounded capitalized). They get money from BIG PHARMA in order to turn their heads even when they know people are taking fraudulent products, and some even get enough money to convince them to legislate mandates and subsidize vaccines.
Oh, but while we’re at it, don’t forget your family doctor. S/he’s in on it too. See, they just really love to stick needles in your child’s arm. When you try to tell your doctor that you did that googling thing and read some stuff from a YouTube commenter on the internets and are sure that your son got autism from vaccines, your doctor will just laugh and you. Why? Because doctors think they are so smart from going to school and hate mothers and children. That’s why they became pediatricians in the first place, just so they can poison children then laugh about it afterward while rolling in their BIG PHARMA money.
I know this sounds like I’m exaggerating, but I’m completely serious.
Many are the times I’ve tried to convince people just how off the plantation the hard core anti-vaccine movement is. People don’t believe me. They really don’t–at least not until they see for themselves. Sadly, in the comments there is at least one atheist anti-vaccinationist who is confusing correlation with causation and proclaiming without a whiff of embarrassment that, by not vaccinating, she’s giving her child a free ride on herd immunity. At the same time, alas, she is also demonstrating that being an atheist is no guarantee of being science-based (paging Bill Maher!) and that people who self-associate with the skeptical movement are often not very skeptical at all in some areas or confuse pseudoskepticism with skepticism. In any case, here it is on display in a series of videos posted by Bruce Critelli. Feel free to watch them or not; they are there mainly for completeness’ sake, so that you can see what we’re dealing with.
Here’s Part 1:
Now here’s Part 2 (with Andy Wakefield himself!):
From the account by Jeremy Witteveen:
In fact, when Wakefield took to the stage, the crowd leapt to their feet, clapping and cheering. The critics were right, Wakefield has been martyred, canonized and deified. Frankly — and you can see from the clip — he’s kind of a dick.
Tell me something I didn’t already know.
Here’s Part 3 (with Vaccine Gestapo!):
Did Louise Kuo Habakus actually compare “Vaccine Gestapo” to protest songs from the civil rights movement and against the Vietnam War? Yes, she did, and she was utterly without irony when she said it. She even said that the vaccine issue is the “defining issue of our time,” you know, just like the civil rights movement and the Vietnam war were the defining issues of the 1960s. Talk about an inflated sense self-importance!
Part 4 (with a singalong, and Andy himself singing along!):
Funny, is it just me, or does the logo used by American Rally for Personal Rights look and awful lot like the rising sun logo of imperial Japan during World War II?
In any case, if you want any further evidence that Andrew Wakefield has completely abandoned any pretense of science, the video above should put any doubts to rest. It’s all there, claims that there can’t be a “genetic epidemic,” that vaccines are more dangerous than the diseases against which they protect, that pharmaceutical companies have silenced him, and that vaccines aren’t adequately studied for safety. As if he would know. He also began with a truly offensive anecdote about a mother who told him that she wanted to take her autistic son with her when she dies because she’s the only one who loves him.
Then, there’s Autism News Beat, who was also there, described the rally thusly:
Rally organizers clearly expected much larger crowds, as evidenced by dozens of anti-vaccine signs still unused by 5 pm, when the park started to clear out. A sign-in sheet listed about 35 names and email addresses. Hundreds of free bananas remained unclaimed, and most of the vendors’ tables that surrounded one side of the quad remained empty.
Meanwhile, the rest of city carried on as normal. In this case, that was a good thing.
It is a good thing indeed. By all accounts, the rally fizzled. Big time. Not only that, but Chicago area skeptics rallied and made an excellent showing, serving notice to the anti-vaccine movement that they no longer have an open field. No longer can anti-vaccine loons expect to spew their misinformation uncontested in major cities in the U.S. Great job, Chicago skeptics! I can’t wait to meet you all in August.
Yes, it’s pretty clear that the American Rally for Vaccine Choice was an utter failure. The anti-vaccine activists failed to get anywhere near the numbers in the crowd they expected, and the speeches and music were so full mental jacket loony (particularly the music) that they demonstrated for all the world to see that this was pure anti-vaccine crankery. The optimist in me wants to think that this is part of the dying gasp of the anti-vaccine movement. Think about it. Their big rally fizzled, but not only did it fizzle but it made anti-vaccine loons the object of justifiable ridicule throughout the skeptical, science-based community.
In fact, if you want an indication of the frustration that the anti-vaccine movement is feeling as they are ridiculed and their message fails to gain traction outside of the pseudoscientific fringe, just take a gander at this post by Dan Olmsted at AoA entitled Olmsted on Autism: Rhymes with “Struck Off”! When an anti-vaccine propagandist like Olmsted, who normally tries to be polite and so desperately wants to be taken seriously, starts rhyming things with the F-word, you know things are bad. When he writes something that’s even more delusional than his usual posts:
The American Rally for Personal Rights Wednesday in Grant Park was many things — a strong first step for a new organization that now is in position to gain more funding and support from like-minded groups that support personal rights; a great affirmation on a beautiful day that the tide is turning toward parents who say their children were injured by vaccines despite the rearguard actions of the medical establishment to deny, delay, and distract; and a way to celebrate the many children who have improved and even recovered with treatments that include the dreaded “B” word — biomedical interventions. As if on cue, The Chicago Tribune was out with a hate piece about the rally, Alison Singer sniping from across town at a vax conference about the overwhelming science that vaccines don’t cause autism, yada yada yada.
A “strong first step”? In what universe? With only maybe around 100-200 people who looked pretty demoralized and pathetic in the videos I’ve seen thus far, the efforts of the speakers to get them fired up notwithstanding, I don’t see how anyone can characterize this rally as anything more than an abysmal, embarrassing failure, which is, of course, a very good thing indeed. Truly, Kev was correct when he characterized the rally as a “bit of a damp squib.” No wonder even the more reserved Olmsted is channeling Orac. He’s engaging in some serious wishful thinking. After all, as Kev pointed out, aside from Andrew Wakefield, most of the big machers of Autism One weren’t even at the rally! They were nowhere to be seen! Jenny McCarthy wasn’t there, nor were any of the other Generation Rescue bigwigs–or even the little wigs, aside from Jake Crosby, of course. I haven’t watched all the videos yet, but it didn’t look to me as though J.B. Handley even bothered to attend. Whatever contempt I might have for J.B.’s understanding of science and what he does with his ignorance (and I have a lot of contempt for J.B.’s understanding of science), I do have to concede that he does have not inconsiderable business and P.R. savvy. My guess is that J.B. knew a stinker when he saw it and stayed away.
Far, far away.
All that left were Wakefield and his groupies. There were the The Refusers too, who, while Michael Belkin, the man responsible for The Refusers’ “music,” was pure comic gold, did not exactly leave an impression other than that of extreme unintentional hilarity. Speaking of unintentional hilarity, check out this passage from Kent:
But the real theme of the day was the arrival of Andy Wakefield as a full-fledged combatant in what is now an American revolution against the insanely overzealous and understudied childhood immunization program, along with other environmental threats to the health of future generations. In his powerful speech, Wakefield alluded to that, saying this country is the place where revolutions have a pretty good record of succeeding, and promising to stay with the fight till it is finished. In a way, the final severing of his ties with the British medical establishment gives him the energy and focus to become the moral leader of the battle in this country. Even a Colossus must find it hard to bestride two continents at once.
Comparing Andy Wakefield to a “Colossus”?
Heh heh heh.
I’m sorry. I couldn’t help myself. The thought of comparing Wakefield to a “Colossus” bestriding two continents at once was just so funny that I couldn’t stand it.
Back to business.
I’ve alternated between extreme pessimism and mild optimism regarding the success (or lack thereof) of the anti-vaccine movement. Thanks to the American Rally for Personal Rights, I’m in one of my optimistic moods. Think about it. Andrew Wakefield has been totally discredited. The big anti-vaccine rally meant to publicize Autism One and the “health freedom” views to the masses was only attended by maybe 100 people. Generation Rescue and Autism One are not in the news. Meanwhile, compared to even last year, few mainstream news outlets are going to the anti-vaccine movement for quotes anymore, and when mainstream news outlets do stories on vaccines these days it appears to come down overwhelmingly on the side of science. In a desperate attempt to use rhetoric that has some resonance among the general public, particularly in this Tea Party-infused political time, Generation Rescue starts trying to link up explicitly with the “health freedom” movement and using rhetoric of “personal choice” to justify its anti-vaccine stance. Then that fizzles. Then, whenever the media interview Andrew Wakefield, it seems that whoever is interviewing him also interviews the skeptical side, such as Brian Deer. His book is being panned by anyone who knows anything about the issues involved.
Meanwhile, in contrast to the past, groups of skeptics (as opposed to the occasional lone brave skeptic) are organizing to show up at anti-vaccine events and counter the misinformation. It’s a beautiful thing to behold, particularly after my several years at this when it appeared that the skeptical movement didn’t view combatting anti-vaccine quackery as being anywhere near as important as combatting creationism or debunking the paranormal. As I’ve said before, the anti-vaccine movement is a threat to public health now. If there’s a form of pseudoscience that should be near or at the top of the agenda of skeptical organizations, it’s the anti-vaccine movement. It’s also one of the rare occasions where I feel no qualms whatsoever about kicking someone when he’s down.
One need look no further for evidence that the anti-vaccine movement is down than the ridiculous rally at Grant Park and the hermetically sealed nature of Autism One, where skeptics are not allowed and never is heard a discouraging word against the idea that vaccines cause autism. Unfortunately, the movement is not far enough down. It may be fizzling right now, but if there’s one thing I’ve learned over the last several years, never count anti-vaccinationists completely out. They are amazingly zombie-like in their ability to rise from apparent death to endanger children again.
160 replies on “Is the anti-vaccine movement fizzling?”
When I first heard about this event I was worried it actually would take hold, that large crowds would come out, that the media would grab a hold of it and it would get large amounts of airtime for the movement. So I am happy to see how it has fizzled. In a city the size of Chicago it cannot be that difficult to get people out especially with the advanced warning of this event.
I have not looked at the anti-vax blog posts about this yet but has anyone seen the estimates they are providing for the number of people? I am curious if they are grossly exaggerating the numbers or not. Last year I went to counter protest an anti-abortion rally on Parliament Hill and I expected to see large numbers but there was at most 200 people and that would be generous as an estimate. However when I checked online later I saw reports from those involved that there were 300-500 which was either dishonest or those people lacked estimation skills.
Just how much time and effort have you dedicated to this task of showing people who choose not to vaccinate to be loons? I think you should go and find a dark room and have a good lie down.
Tony Bateson, Oxford, UK.
As much time as it takes, Tony. As much effort as it takes.
However, given the looniness at this rally, the effort required has fallen to near zero.
I how I hope that this is truly the end of the anti-vaccine moement, or at least of it being seen as a completely acceptable alternative viewpoint.
Not 100% on topic, but can anyone explain to me how a woman who has refused to vaccinate her child at all can still blame autism on vaccines? I recently ended up in a debate about the autism -vaccine link (or rather the lack thereof) with a friend of a friend on Facebook and just gave up completely when I learned her “mercury poisoned” child was never even vaccinated at all. Clearly, mom was anti-vaccine well before autism reared its head and will latch onto any anti-vaccine argument, even when her own child is evidence against it.
Yeah, because caring about another human being’s life is totally crazy.
I know they are a confused lot, but were they expecting Ray Comfort?
Andrew Wakefield: Colossus?
If I hadn’t got to reading medical blogs such as this one or Science-Based Medicine I’d have never heard of him. So Colossus rings rather false.
Does anyone know what the registration numbers for Autism One were like? I had the impression that there were hundreds, or even a thousand or so. In that case, it must have been that a low fraction of the registrants bothered to attend the rally. It may be that many of the autism “biomed-treatment” parents are moving away from the idea of vaccines as a cause. In that case, you’ll be busy for many years fighting the woo that is “autism treatment”, as the parents move to other “toxins” as causative of autism.
I do think this is the beginning of the end and it all starts and ends with Wakefield. When you look at the recent events that have happened to him, they are very accessible ideas to the public. Even if people do not have enough science background to understand a journal article (and its really hard to have enough background, even a scientist reading an article outside his field can have a tough time) the implications of having a journal article removed, and then having the lead author stripped of his license to practice..are crystal clear. There is no way around those two facts. The people in charge of deciding whether or not the study that started this all was good science have decided it was bad science and the people in charge of deciding whether or not Wakefield is fit to see patients have decided he isn’t. No amount of youtube comments can change these two facts.
Knowing them, more like Gene Ray.
Anyone have any good pictures of skeptic signs that were present?
You’ve got Kent as the writer of the piece at AoA; it’s Olmsted. [ORAC: Brain fart. Fixed. Not sure why, but I frequently mix up Kent and Dan.] And you missed the most important part: an unintentional slip by Olmsted where he writes that Wakefield should f-off: “And as a parting shot to Andy and America’s former overlords, the only phrase I can think of — well, it rhymes with ‘Struck off”!'” I wrote it up as An Endless Stream of Dumbasses last night on Countering.
Also important to note is that the live stream of the rally was watched by 231 individuals at its peak (50 minutes in when I got sick of watching it).
…and today Big Brother announced that seventy million boots were produced in the last year, twenty million more than forecasted!
With moral leaders like him, who needs enemies?
Maybe they were trying to dose the attendees with aluminum?
It occurred to me Olmsted could have meant Andy’s and America’s former overloads. See, a ‘s can make a world of difference in the meaning!
If Wakefield is a Colossus, does that mean he has a special blue glowing weak point that we can clamber up to and stab him in, forever ending his reign of terror?
Perhaps the weather and the weight of his own ego will simply cause him to break off at the ankles and sink into the ocean.
Because TEH TOKINZ are so horrible they’re actually contagious. The marginally less ludicrous (e.g. Stagliano) claim that they’re passed down from mother to child.
The truly loony think that walking on the same side of the street as someone vaccinated is enough to become hopelessly contaminated. This claim is sometimes accompanied by the argument that there really aren’t many vaccinated people around, which you can easily tell because every single one of them is obviously deathly ill to the naked eye at all times.
I only wish I were kidding, but that’s pretty close to a direct quote from someone profoundly disturbed who posted here a while back…
lmao…that first vid…lmao…did she really say “Look at all these balloons…” in an attempt to exemplify the strength of numbers w/in the movement.
Ohhhhh…lmao…that shit’s got me rolling on the ground.
My wife is a âbeliever.â She is convinced that vaccines are responsible for our sonâs autism. And even SHE has given up on Age of Autism. She used to read (and swallow) every word AoA spewed out, and commented there several times every day. But she no longer visits the site because, in her words, âeveryone there has gone off the deep end.â
My wife IS AoAâs target audience. If they canât hold onto HER, they truly are in their death throes. (Which is a good thing.)
And I have to say . . . ever since she stopped reading AoA all day, the atmosphere in our home has improved tremendously. Her anger level has gone way down. She hasnât gone on a good âBig Pharmaâ rant in weeks.
Maybe . . . maybe thereâs reason for hope here. Maybe . . . maybe I can get my rational, clear-thinking wife back again.
Ohhhhh…man, Orac…you got me cryin’ from laughter w/these vids you posted.
Watching Wakers attempting to lip-sync “Get your mandates out of my body…”, I gotta believe he’s on stage thinking
“Hmmmm nice going ya dumbass. Countless hours of studying, college exams, residencies, board exams…more exams…and this is where I end up?!? And buggar me if this yank sings anymore. Oh, I do hope my investment in the Greek economy payoff!!!”
“Hundreds of free bananas remained unclaimed.”
A travesty. A goddamn travesty.
Fruit going to waste in the middle of fruit going to waste.
Won’t someone think of the banana farmers? (Actually, you probably don’t want to do that)
hm. 200 borderline delusional personalities all in one place.
to be a clinical psychologist in such a place, with some assistants and some survey forms.
@ Wren and Scott
Absolutely, the magical thinking is unbelievable.I’ve run into several over the years on message boards whose children have autism but were never vaccinated, and the parents still blame vaccines. One poster said, when asked to explain her position, that although her son was never vaccinated, and she herself was never vaccinated, her son’s autism was due to the one vaccine her husband got as a child.
One thing to consider before we all start running victory laps -I follow this issue fairly closely, but I hadn’t heard of Louise Kuo Habakus until I got wind of this rally. Is she just some random kook that hitched her wagon to the broader anti-vaccine “movement” without earning much buy-in from Handley et al? I’m just wondering what the implications are of the muted response to this thing and if some insight on the anti-vaxxer’s current internal dynamics.
I’d be more interested to learn about what took place at the AutismOne conference and what sort of planning took place there between Generation Rescue, NVIC, PROVE and that lot. Something tells me it ain’t over yet.
The vid made me seasick but I could at least listen to the idiocy right up to the song. Jesus H Christ. I almost, almost, feel sorry for this handful of lunatics. Seriously.
I’d like to make a personal plea to the 200 people there: please don’t have kids.
What were they thinking? Bananas contain formaldehyde! Of course none of the crowd wanted the bananas. They contain toxins!
“In a way, the final severing of his ties with the British medical establishment gives him the energy and focus to become the moral leader of the battle in this country.”
Orac is right: They’ve totally given up trying to pretend they have science-based backing. I’m thinking they may even blow off abusing chelation therapy in favor of funny lead-based powders. Expect Wakers to start openly shilling for CAM stuff that has more toxic-metal poisons than a hundred thousand doses of thimerosal delivered at once could muster.
Habakus earned her anti-vax cred by leading “health freedom” warriors agitating for “vaccine choice” in New York and New Jersey. Here’s her website:
She appears to be claiming credit for the defeat of Jon Corzine for governor of NJ based on his support for vaccine mandates and the victory of his opponent and now NJ governor Chris Christie, who supposedly supports “vaccine choice.”
I’d view Habukus as a rising star in the anti-vaccine movement. Moreover, Age of Autism promoted her rally rather heavily, and Ginger Taylor is on the organizing committee of the rally. Ginger, while not strictly a member of AoA’s stable of bloggers, does appear to be tight with them and has had stuff posted on AoA before.
Finally, Habakus was named AoA’s Person of the Year last year:
I think that’s enough evidence to be highly suggestive that Habakus is not some sort of upstart outsider who did this without GR buy in.
Wow, I just checked out Wakefield’s new book on Amazon they talked about on that viedo (which I did not have the mental constitution to finish), titled Callous Disregard. Dear me, if anything out there needs a good pharyngulating…I can’t imagine what redeaming qualities that book could possibly have. Being softer than the Sears Roebuck catalog is likely its only virtue.
I think we need to coin a phrase for when markuze randomly drops a steaming load on a skeptical plog post, maybe dennification? The DM BM?
of course, now it’s deleted and I look like an idiot. And I spelled “blog” wrong. Maybe I am an idiot… OH NO!
We’ve all seen the DM BM droppings. Not to worry. You look fine.
Not a chance. It’s like epidemics: after a while, they burn out the susceptibles in the media  and the noise dies down for a while. The usual professional nutjobs like Mercola and Scudamore keep making asses of themselves, but they don’t make headlines. Then someone like Wakefield comes along and there’s a “fresh” angle to it all. This time it was autism, previously there were other excuses.
Like annual weeds, they do come back.
 Never mind the reporters, it’s the editors and publishers who can tell when a story is stale.
I was at the rally videotaping. Here are a few things I noticed.
I did a count (as best I could in a moving crowd) and came up with a little over 100 people. That includes six security guards sitting in the shade away from the event, twelve skeptics and the “media”, most of which came on the two buses with most of the rally attendees.
There was one reporter from the Chicago Tribune (who wrote a very good article that promoted our pro-vaccine stance). Someone said they saw Telemundo videotaping for a few minutes.
The people I talked to were very friendly but not very well informed. Without telling them who I was, I asked questions about why they believe vaccines are harmful. To a person they gave me two or three taking points but couldn’t elaborate on details. I pretty sure they had a pre-rally rally while they were on the buses.
I’m proud of our quick response to this opportunity. Elyse from the WTFF called us Skeptical Ninjas and I wear that name as a badge of honor!
Video from the event can be found here:
Or maybe they wanted to use the bananas to irradiate them with potassium 40.
This rally gave me hope that this anti-vaccine movement really is relegated to a few kooks desperately clinging to their conspiracies. They were on the east side of the tracks away from downtown proper so there wasn’t much foot traffic at all. The best thing we could have done was to observe and document because this was more of a book tour for Wakefield that a public expression. Bruce (above) described it accurately as a “company picnic” and that’s what it resembled best.
Those pictures posted make it seem like a decently attended festival. Really though they only occupied about 1/4 of their alloted space if that. Here’s a panorama: http://www.flickr.com/photos/d4v3r5/4643547553/
Speaking of wakefeild, post on the JREF forum is worth a read. Looks like he had already gone off the deep end well before the MMR business.
Oh great! Kuo Habakus is publicly developing a new NJ female stereoptype to refute along with “Carmella Soprano” and the “Jersey Shore” girls: the anti-vax *maitresse de woo*. She’s from Red Bank(i.e. south of that mysterious dividing line that separates north from south)and “practices”(whatever she “practices”)in Middletown.This area (Monmouth County)has seen a huge influx of affluent couples: prime territory for “mommy-knows-best”-ism.Supposedly there was a “satellite rally” in Edison: no reports on that. One of Orac’s commenters described a poorly-attended event in NYC, which is quite telling:if you set up a table selling vintage clothes or have 4 twenty-somethings playing Beatles’ medleys, you could easily attract 100+ onlookers.A *pan-pipe group* gets 100 listeners.
Some claims I’ve seen:
1) Autism is caused by an attenuated virus from one of the live vaccines, and their kid caught the attenuated strain from a vaccinated kid. (Why the more virulent wild virus wouldn’t also cause autism is beyond me)
2) The vaccines the parents got “damaged” them in some ill-defined manner which got passed on to their children. Of course, if it worked that way, the vaccines would have to cause genetic damage to the germline cells, in which case they’d be causing a lot more problems than just autism. Unless by some bizarre method they only damaged the genes related to autism.
If you had a rational, clear thinking wife before, you have one now. Albeit one who is heartbroken. She sounds like she smart enough to see AoA for the hate-filled echo chamber that it is. I think you have plenty of reasons to hope. Keep being there for her, she and your son are lucky to have such a supportive husband and father around.
We try to focus on our son as a person, and try to see his disability as a challenge, and not a curse. I say try because there are days when you want to give up, but there is improvement and it is so satisfying because it is hard won (by you and your son).
So, so glad to hear things are getting slightly better. 🙂
That and he openly sympathizes with people who said they are considering murder suicide.
I love the music. It’s kinda catchy and, more importantly, so over-the-top as to be utterly ridiculous.
It makes them sound like they won’t get vaccinated not for the reason that the government’s going to put mind control chips into their bloodstream or something. It’s great.
You people can laugh, but the way the movement is growing, next year the rally will be in Lincoln Park.
That way, they can hire a boat.
I think Wakefield could be considered a Colossus if one considers Colossal + Phalus = Colossus.
I think that events like the Lancet’s retraction of Wakefield’s paper and Wakefield’s being struck off by the GMC carry a lot more weight with journalists and the public than with those of us who follow the scientific literature may realize. It has been common knowledge for years among scientists in the autism field that Wakefield’s work has been discredited. But science does not really have official spokesmen, so to a journalist, who doesn’t have time to read through dozens of papers in scientific journals, much less do the background reading to understand them, it can be a bewildering case of “one scientist says one thing; another says the opposite; how do I know who to believe?” I think a lot of the “false balance” news reports simply reflect the actual confusion that journalists experience in trying to navigate a complex and highly technical subject. And of course, the “maverick scientist” narrative has a lot of resonance with the public, especially to those who have not seen many, many cases of the maverick being simply misguided.
So an official regulatory body like the GMC, or the editorial staff of a journal like Lancet, which stands to lose status by admitting error, carries more public weight than the opinon of a scientists with a long list of major publications in the field. Cranks never go away, of course, but I think that this has been a major setback for the antivaccinationist public relations program.
I agree with your point, although quibble with your use of “us.” 🙂
I said from the beginning that the retraction of his paper was a HUGE blow to their cause, especially among the general population. In my life outside of the science-happy forums, I saw the response to the retraction. It was of the, “Did you hear the paper claiming that MMR caused autism was retracted? That’s interesting.”
So the message was heard loud and clear and it certainly made an impact on the general community. We do lead an insular life here, and are pretty focused on the extremes, but what most people know are, 1) there was a paper that claimed MMR caused autism, and 2) that paper was retracted.
They don’t care about the scientific process or issues. Having it published was a stamp of approval. Having it retracted was a stamp of rejection.
At this point, the fact that Wakefield was struck off is only interesting to people still paying attention.
The anti-vax movement is effectively dead. It’s not 9/11 Truther dead, but getting there very quickly.
lmao…that first vid…lmao…did she really say “Look at all these balloons…” in an attempt to exemplify the strength of numbers w/in the movement.
Yeah, she did, and there weren’t even that many balloons. So if they were representing the “hundreds of people” who couldn’t attend, I think somebody needs to learn to count.
“…but can anyone explain to me how a woman who has refused to vaccinate her child at all can still blame autism on vaccines?”
Did the mom by any chance have a flu shot while she was pregnant, or shortly before? Because I’ve heard that one a lot lately.
Pablo, I have to try my own little test on “the general community” in a few weeks. My sister just had an adorable little baby boy, her first. A couple of months ago, while she was pregnant, the vaccine topic came up. She was a little worried, but knew in her head that getting the bambino immunized is the right thing to do. I gave her the facts and told her “get the shots”. She said it was her husband who was definitely more against vaccines, but she was going to insist on them.
I get to see my new nephew at the end of June and I’ll try to work this into the conversation and see if her husband noticed any of the latest news and was swayed to the right way of thinking.
Shoot! One of those was supposed to be a preview. I swear I didn’t hit the post button twice. Sorry.
“She told me that he didn’t look at it & just put it in his pocket, thinking that he got the phone number from some hot young lady.” Um, did the “skeptical teacher” actually refer to herself as a “hot young lady”? I beg to differ. And how could she possibly know what Wakefield was thinking as he took her little “note”? Methinks she projects too much. Sounds like something her students might do, pass a “note” rather than speak to his face.
I beg to differ too because the skeptical teacher is a guy you nimrod.
Actually, diatom, that wasn’t her self-description. (Though she is a hottie, as The Skeptical Teacher accurately describes. And no, you probably can’t date her. But take heart — neither can Wakers.)
Here’s her take on it:
And for her own blog post on the subject:
You can now apologize to Jamie. 🙂
@8: “It may be that many of the autism “biomed-treatment” parents are moving away from the idea of vaccines as a cause.”
I believe I have seen this in action: Last fall, I was at a convention with high “biomed” representation, including a panel of DAN! doctors. In the panel, nobody mentioned vaccine causation, not even when somebody asked about “Autism’s False Prophets”. I would take this as an indication that, at a minimum, canny biomed reps consider blaming vaccines a PR liability.
Incidentally, with the rally, I think we can’t put it in full context without info on Autism One. The rally may have been diminished by competition with the convention.
Competition? The whole reason they did the thing this week was to take advantage of the AO crowd in town, hoping to ride the sentiment of those attending it.
Did you notice that it was written in the third person? The key hints were the first three words you cut and pasted: “She told me.”
Uh, David, if you look at the daily schedule for Autism One, you’ll see that there were no afternoon sessions on Wednesday. Clearly AO wanted its attendees to go to the rally:
As “nimrod” Adam has pointed out, apparently the skeptical teacher is a man? So is the “hot young lady” one of his students??? Anyhow, if he is advising the young lady, he might suggest that speaking to someone face-to-face is a bit more mature and courageous than passing a note.
Diatom, read the full link. The answer is there.
I was thrown off by the fact that the teacher is a member of “Women Thinking Free”.
So? Perhaps they don’t discriminate.
Anyhow, what’s the point of the teacher and the young lady being photographed with Wakefield? Some sort of hypocritical thrill seeking? I don’t understand why the skeptical teacher promotes this kind of behavior as a teacher, getting his photo taken with someone he abhors, and admiring a young person for passing a nasty note along to boot. Thankfully he’s not teaching my kids.
Now I get it. Read the skeptical teacher’s self-congratulatory post for May 28. He calls Wakefield an “uber-douchebag”. Obviously he has not outgrown the mindset and vocabulary of his high school students. Someone should inform him that part of his job is to be a role model, not a victim of arrested development.
I just hope YOU’RE teaching your kids to be as judgmental and pigheaddedly reluctant to actually read an article in context as you are. It’s parents like you that the rest of us hope for the future.
Because they are considerably more intelligent and tactful than the brainless anti-vax brigade. The latter merely resort to their infantile responses and spit or take swings at people they disagree with. The more venal and cowardly ones threaten peoples’ children and harass their employers. I don’t think your criticisms are particularly well-placed.
Naw, I do that too. It’s fun!
“Because they are considerably more intelligent and tactful than the brainless anti-vax brigade.” Really? I don’t see any proof of that. Calling someone a “douche-bag” is a poor example of intelligence and/or tact. Still doesn’t explain why they want their photos taken with Wakefield.
I don’t think your judgments are particularly well judged.
I’m really not sure who you think you’re bamboozling with your “Oh I just don’t understand why they want their picture taken with him!” act. It takes about 2 spoonfuls of critical thinking ability to see the humour in juxtaposing smiling happy faces with two camps who are diametrically opposed, especially compounded by the fact that only one half is in on the joke. Even if you did lack that basic level of comprehension, it’s out-and-out stated in the article. It’s what the kids these days are calling “irony”, although it’s really not ironic.
Acting like one isn’t doing you any favours either.
diatom sounds awfully butthurt.
Judge that Judgy McJudger!
Ian, take a look in the mirror. Your projections are a bit unwieldy and lacking in evidence. You merely illustrate that you’re trapped in the same stage of arrested development as the skeptical teacher. I don’t find that brand of “irony” particularly entertaining. I can only repeat that I am glad the “skeptical teacher” isn’t teaching in my neighborhood.
Thanks for the link, it does clarify things, but I don’t think it can be counted on to tell the whole story. I would not be surprised if there were other activities going on at the same time as the rally. (After all, it appears Olmsted and several other AoA staff are unaccounted for.) A major missing datum is how many people were at Autism One. Also, I see a mention of people being bussed in; if that means from out of town, then there may have been little overlap with Aut1.
Something I find interesting is that there aren’t that many presentations obviously about vaccines. I did a once-over for mention of vaccination plus key words immune, mercury, etc, and came up with 25 or so. I also noticed these were concentrated in the final few days, which from my (sci fi) convention experiences is not a very good “time slot”: By the last day, there’s a good chance a lot of attendees will have already left.
Wakefield has caused a lot of damage for over a decade; so what if a pejorative gets tossed around on a blog or 10. They were more than civil with the rally attendees. So again I say, given that sceptics are not regarded in the same manner, your criticisms are vapid, at best.
Oh and something to ponder; skepticteacher may very well be in your neighbourhood and may even be your child(ren)’s favourite teacher.
Oh noes! Projection! Bam! Right in the kisser!
You got me, diatom. You’re so very very right: since you don’t find it entertaining, it is therefore not funny. And the careful analysis and explanation provided as evidence of your douchebaggery should be ignored on the basis of your giant, drooling tu quoque throwdown. You sir are clearly the superior mind, and I bow before your cerebral majesty.
Oh, and I took your advice and looked in the mirror. You were completely right: behind the rugged good looks and Herculean physique were the sad eyes of a little boy who just wants a hug from someone like you. Won’t you please hug me? I’m so roooonery!
I sense that someone is being mocked.
Science mom, I have no doubt that many teachers are still behaving as adolescents. I have witnessed it in action unfortunately.
remember that they were calling for a big turnout of support for Mr. Wakefield in NYC after his appearance on the Today show.
I have not seen one picture and no comments on AoA that refer to the turnout at all.
I wish I had been there with a camera.
The Skeptical Teacher teaches high school and college physics. I sincerely doubt that a child of a person who cannot understand that a sentence starting with “She told me” is third person not first person view will be taking high school physics. So there is very little danger of that child being taught by the Skeptical Teacher.
Sullivan, the pictures posted here show the empty tables and unused signs.
The red-shirted staff members give us a means of estimating the crowd even though we don’t have the ability to count every person at the rally.
There were – according to a picture posted on another site – approximately 40 red-shirted staff members. In ten frames evenly spaced thoughout the videos of the crowd, I counted an average of four crowd (non-red-shirted) members for each red-shirted staff. If we assume that the staff were evenly distributed throughout the crowd, that gives a crowd of 160 (maximum).
If not all of the red-shirted staff members were in the crowd at the time of the video (some of them might have been guarding the bananas), the crowd number would be even smaller.
That’s a pretty small crowd for Grant park in Chicago on a sunny afternoon, especially if they were giving out free bananas. I would have expected that big a crowd from just the people curious to see what all the hubbub was about. How low has the vaccines-cause-autism movement sunk when their message (or messenger) is repellant to idlers and gawkers?
For that matter, how far has Andy Wakefield sunk when his “buddies” (JB Handley, Jenny McCarthy, etc) won’t even turn out on a beautiful Chicago early summer afternoon?
I perceive a trend here – kicked out of the Royal Free, kicked out the The Lancet, kicked out of “Thoughtful House”, struck off the medical register, dissed in Grant park….where will it end? Andy’s going down the drain, spinning faster and faster and faster and…..
Frankly, if he “spins” his long (and growing) line of defeats any faster, he’ll come apart from the centrifugal force.
I don’t have any hope that the true believers in GR and AS will ever give up their delusions, but I’m beginning to have hope that they’re heading down the same road as the cold fusion “believers”. This year in Grant park, next year maybe Meineke park (Schaumburg, IL).
It’s schadenfreudefeste time! Everybody polka!
I couldn’t watch all the videos–I just don’t have a strong enough stomach.
At the risk of sounding blasphemous, I did notice that in the second video ex-doctor Wakefield looks as though he’s been studying Jesus paintings on velvet to get his pose right.
Your concern has been noted. Now, do stop clutching your pearls so tightly; you’re liable to break the string and lose your marbles all over the floor.
Actually, I did some research: White supremacists think Wakefield is being suppressed and there is a cover-up regarding autism and vaccines by the Zionist-occupied government. I would like an explanation from a anti-vaccine proponent why pro-vaccine organizations are being called these names when you are saying things that are in agreement with Nazi beliefs…I really would like to know since they have a propensity to bring up the Nazi card…
From the Nuremberg Code on NIH’s site:
1.) The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.
The Nuremberg Code applies to all experiments, not just ones with drugs.
Did Wakefield do that for the children? It looks to me like the SUBJECT had to give consent and that a parent could not do it. There has to be forms showing they gave consent, right? I would like to see them if that is true.
In certain circumstances (e.g., in pediatric research populations), parents give consent, but the researcher is also required to obtain assent from the child. So, in Wakefield’s case, it was likely that the parents were the ones to sign the consent form, and the children would sign an assent form (simpler language). In the case of children with autism, depending on the degree of severity, I could see a subject advocate also being required by the ethics review committee that reviewed the protocol.
I’m not sure of the details surrounding the IRB approval for Wakefield’s study, but that is my understanding from my own work on an IRB.
Where Wakefield also likely went wrong is the collection of blood samples from the kids at his son’s birthday party. Not only is it an inappropriate place and his paying the kids 5 pounds for it likely being undue influence (depending on whether it was mentioned before or after the blood draws), I’m willing to bet that he did not obtain written informed consent/assent from any of those kids or their parents. That is a pretty big ethical violation.
Todd, at least I guess I’ll be a step behind you with the loose marbles….and your pearl fetish.
ZING! ‘Tis a pity I don’t find that brand of “irony” particularly entertaining.
Regarding parental consent for research, generally parental consent is sufficient, pediatric assent is not required from children not capable of fully comprehending the matter at hand, usually the cutoff is at seven years of age.
Interestingly, according to this paper âThe regulations also do not specify what information investigators must provide children as part of the assent process or whether payment may be offered to encourage childrenâs assent.â Apparently paying children is not considered unethical.
And even more interestingly
âAsking for assent from children who are not capable may upset them and hinder important research.â
Just sayin: I never claimed to be entertaining. But c’mon, get a larger vocabulary.
From the aforementioned paper, this is priceless: âA total of 58% of IRBs would enroll a child who is incapable of assent in a nonbeneficial study, even if children who are capable of assent could be enrolled instead. Almost half (46%) of chairpersons believe that it sometimes or always acceptable to offer incentive payments to children, and more than one third (35%) thought it acceptable to offer payment to the parents.â
Those who live in glass housesâ¦â¦.
Oh, I wish I hadn’t looked at the sing-a-long video. I actually began to feel sorry for Wakefield.
“Apparently paying children is not considered unethical.”
Exactly, it’s down to context. Reasonable re-imbursement is not unethical. Re-imbursement that is deliberatly insufficient, or which is large enough to unduly influence could be unethical.
Appropriately conducted research with ethical fore-thought and prior approval in an appropriate setting, properly represented in a professional manner, is unlikely to be considered unethical. Research conducted in an inappropriate setting with no apparent ethical forethought and apparently arbitary (and possibly ad-hoc) re-imbursement, would be unlikely to be considered ethical or even competant, regardless of how it is represented afterwards.
Hence the nature of the charges against Wakefield.
So we can all agree that you aren’t entertaining?
For everyone’s sake, please stick to your drab, stubborn Dunning-Kreuger-type comments and let the more perspicacious and sagacious continue to discountenance your exiguous intellect then, won’t you?
Dedj: I really haven’t followed the Wakefield case, is there proof that Wakefield neglected to get parental consent?
Just sayin: I’m always happy to see someone using a dictionary, whatever the motivation. BTW, check your spelling of Kruger.
“Dedj: I really haven’t followed the Wakefield case, is there proof that Wakefield neglected to get parental consent?”
No, and that wasn’t the concern, nor does it invalidate the concern despite apparently being true.
Getting consent does not absolve you from the question of whether your behaviour is ethical.
Aside from the issue of whether your methods to obtain consent are ethical or unethical (consent is usually only valid if the client is informed, uncoerced, and capable. It’s possible to obtain consent through potentially unethical if not outrightly criminal means), as the professional you have a responsibility to ensure that your behaviour that the client is consenting to is ethical. Wakefield appears to have gained consent for unethically conducted behaviour.
Ignorance (or arrogance) is not a defence. Ironically, if he had applied for ethical consent to perform convenience sampling that was to be conducted in an appropriate setting with the appropriate safeguards in place – even with the nominal re-imbursement – his blood sampling may not have been unethical. The ethical breach arises from the total of his behaviour, and the apparent lack of any fore-thought, insight or concern.
Indeed, some of his defenders have pointed to guidance (or research into likely guidance in your case) that would allow conveniance sampling and re-imbursement but neglect to consider the difference between working within well considered and appropriately approved guidance, protections and safeguards, and working without even considering such needs.
Anywho, night all, I’m getting really tired.
In a few years, we’ll have reports of Andy standing, unshaved and unwashed, alongside the road with a sign: “Will forge medical research for money.” Or for fame …
Brian Deer @ #43:
Respectfully… I think you mean a “dinghy”, which would be far more appropriate.
Haha, in your dreams. Like a fart in an elevator, they’ll return to haunt us. Besides, their effect is lingering – measles is on the rise again.
Curt Linderman Sr’s view of the rally:
Man. You can’t make this stuff up.
Rally parties? Really? Those must be the lamest people in the world. And 300 online? And that is a success? The web is accessible, if you cannot get more than the number you claim show up physically then there seems to be a problem.
IRBs vary in quality, I will grant that. A good IRB, IMO, would work as best as possible to ensure the protection of not only the potential subjects, but also the population to whom the research would apply.
Regarding consent/assent, read 45 CFR 46.408, “Requirements for permission by parents or guardians and for assent by children.”
(warning: anecdote) Unfortunately, the regulations do not address individuals with limited or impaired mental function, so the IRB to which I belong uses the child regulations as a guidance. Where children with impaired cognition are involved, we assess based on a somewhat more stringent reading of the regulations within the context of the research. I cannot speak for what other IRBs would do, or what the regs are in the U.K., but I can tell you that I would not approve many of the things that Wakefield did (colonoscopies/LPs that were not clinically indicated and/or did not benefit the subject, ad-hoc blood draws outside of a medical environment, where IC was unlikely to have been obtained and where payment may be considered undue influence).
Regarding payment, payment, in and of itself, is not unethical. The question is whether such payment would unduly influence a person to participate in something when they otherwise would not. From 45 CFR 46.111(b):
In the case of the blood draws at the birthday party, the environment was not appropriate, the children were vulnerable to undue influence, and it is unlikely (though I’m not certain) that written informed consent was obtained prior to the blood draws.
It seems to me that the children were paid and not ‘rewarded’, not that that is any difference. No IRB approval, nor appropriate medical staff on hand and a big giggle-fest for Wakers and his following of wankers. Yea, he only cares about the children.
Todd W. since you’ve had experience with IRBs, I wonder what you think of Hyman’s comment. Is there any empirical evidence that you know of that IRBs provide any benefit?
âThere is no empirical evidence that IRBs have any benefit whatsoever.â David Hyman, author of âInstitutional Review Boards: Is this the Least Worst We Can Do?â – Northwestern Law Review, 2007
Todd W. I also wanted to ask your opinion about this. Since the U.S. research subject regulations apply only to research that is federally funded or involves an fda device, what about all the privately funded research and the protection of those subjects? IOM estimates that 50-60% of US medical research is privately funded (industry funded).
Todd W. I was surprised to learn, when I started researching IRBs, that only one member of a five-member IRB is required to have scientific expertise. What role do you think this plays in the varied quality of IRBs and their effectiveness?
Where are you getting the idea that privately-funded human subject investigations aren’t subject to approval and oversight?
Industry-funded human subjects research is subject to the Common Rule and Office of Human Subjects Research protections if that research is intended to be used in an application for an FDA approval of a drug or device. Given that pharma is for-profit, in essence all the human subjects research they do is for the purpose of getting their drugs or products to market, pretty much all pharma research is under the Common Rule. It would be a huge waste of money to do a clinical trial that is not intended to be used in an application for FDA approval.
Finally, as far as privately-funded research goes that isn’t by pharma (private foundations and the like), if the investigators ever want to publish the results of their research, they have to be able to show the journal that the research was performed under an IRB-approved protocol (in the U.S.) or by the relevant ethics panel (other countries). This is a requirement of virtually every medical and scientific journal that publishes peer-reviewed human subjects research. Some journals even require a signed statement that the research adhered to the Helsinki declaration.
Orac – isn’t it also the case that research carried out in major institutes will be under their control, and no serious research institute (university or whatever) will want to open itself to inscrupulous activity, regardless of the funding agency?
I mean, HHMI or Scripps is not going to let shenanigans go on that would tarnish their good name, regardless of what the funding agency requires.
Science mom: I thought it was common knowledge, but you can verify the fact from many sources, including the Federal Register, the book âFederal Protection for Human Research Subjectsâ L. Jastone, Editor; also âInformed Consent: Legal Theory and Clinical Practiceâ second edition, etc., etc.
Hereâs a simple link acknowledging the fact:
See below under Private Industry: âBy contrast to the statutes and organizational offices in place for the oversight of federally funded research, no regulations currently exist to protect people participating in research that is privately funded. Furthermore, no single federal entity exists to oversee human subjects research and facilitate consistent practices throughout public and private research institutions.â
Note that the AAAS site page was last updated in 2002. Legislation has been introduced multiple times since then to extend human research protection to privately funded research, but to no avail.
Thanks for your input, Orac. Still, it is an issue that has not been satisfactorily resolved in the opinion of many. It’s an interesting subject. http://www.fas.org/sgp/crs/misc/RL32909.pdf
âConcerns About the Common Rule. Though the spectrum of regulations that may govern human subjects research have been implemented over time, the regulations that are the basis of the Common Rule were crafted over 30 years ago. At that time, a research project was typically conducted at a single location, and was largely federally funded. Since the original regulations took effect, the number of privately funded and/or multi-center trials has increased.â
âToday the Common Rule governs 18 federal departments and agencies.5 The Common Rule applies to research conducted at or funded by the agencies that have adopted it, though it has not been adopted by all agencies that fund research.6 This means that, in order to be eligible to receive funding from one of the agencies that has adopted the Common Rule and/or other subsections of 45 CFR 46, researchers and institutions must abide by the relevant regulatory provisions.7 It also means that federal law does not require research conducted without federal money (or with money from an agency that has not adopted the Common Rule and/or other Subparts of 45 CFR 46) to be conducted in accordance with these regulations. A number of private companies have voluntarily chosen to follow the Common Rule, though these are not subject to federal enforcement mechanisms if they fail to comply.â
An example of a little knowledge is a dangerous thing. Diatom, how many research investigations are actually working without IRB approval?
I have no idea, do you?
diatom, having had children involved in research, all of which required IRB approval… it is not a simple permission form. Even though absolutely none involved any kind of invasive procedure, not even a simple pin-prick.
I live near a large medical school, and parents of newborns are give the option of putting their children in a database of possible subjects. I did that for all three. It turned out to be an interesting, fun and educational experience for all of us.
The oldest was asked as a two year old to look at stripey lines on research for how to detect vision problems in young children. Since I brought along the his newborn brother, I signed papers for them to see if it worked on newborns.
Later, he was in a study that showed how babies develop language. This involved filling out a form with his age and what words he knew. We dropped from this study after it became clear that he was an outlier, and not developing speech. Plus, it was at a time when he was being admitted to the hospital multiple times for life-threatening croup.
When the oldest was in a special ed. preschool I signed papers for him to be part of an educational study on how rhyming helps with reading. This involved him and some of his classmates being pulled out for small group tutoring and testing.
My middle child was asked to participate in a preliminary autism testing procedure, as a normally developing kid. This involved lots of paper work, including filling out a very familiar form on speech development. It turned out he was language delayed, but they used him anyway to see how the test would work (his language delayed was resolved prior to entering kindergarten with language therapy, and he is doing very well as an engineering college sophomore). They played with him, saw how he played together with them and other children. They even did an empathy test where the young lady doing the screening pretended to cut herself. There was much, “ah, how cute” on his expression of concern. He was deemed a normal child with a slight language delay (he pays for his college housing by being a swim teacher and lifeguard, a pretty normal young man).
When he was older he was enrolled in an even larger study starting in middle school. The study tracked the psychological health of kids in several middle schools, up through high school graduation. Each year involved more paperwork to be filled out, and the only procedure was a long questionnaire and interview with both the child and parent. You can read about that study here:
http://depts.washington.edu/pathways/page2.html (if you go to the contact page you will see a link to the Human Subjects Office).
My youngest has only been used once in a psychological study on toddlers. It involved paperwork, and she only spent an hour playing with blocks.
Interesting anecdotes, Chris. I was referring primarily to biomedical research involving invasive procedures and/or pharmaceuticals.
Much has been written about IRB overkill with regard to social and psychological studies.
That is something you should have ascertained before intimating that there is a large percent of human subject research merely based upon a stat you read, but didn’t apply correctly. Re-read Orac’s post; there isn’t any incentive to perform human subject research without IRB oversight, excepting, maybe, in some educational contexts.
My intimations or your assumptions? I simply asked a question of someone who claimed to be involved in IRBs. I don’t believe the question was directed to you. In any case, your finger wagging is quite educational, thanks.
Unfortunately some things fall through the cracks, as noted with this article: On the ethics of clinical trials of homeopathy in Third World countries.
The institution that the woman who used homeopathy on third-world children is part of is getting a new dean. Since I am a graduate non-matriculated student of that university I was give a chance to give feedback. I sent the above link and thoughts that such studies should not be allowed.
It the most recent meeting of the parents who organize Science and Society talks at the high school, public health issues were mentioned. I think I shall make inquiries on finding someone to speak on human subject ethics. (the trick is finding someone who has a good subject, but also can engage teenagers, which can be tricky)
Oh I’m terribly sorry, I didn’t realise that this was a private conversation taking place on a public blog. Here is your statement again (post #100):
So by all means, please clarify the intent of this statement, if not for suggesting that privately-funded research doesn’t incorporate oversight and that more than half of research is privately-funded.
diatom, it can be assumed the IRB paperwork for invasive procedures would be much more onerous than for psychological.
You wanted experience from those who have been involved with IRBs. I offered mine.
If you cannot understand that Human Subjects safeguards would be more serious when they involve biomedical than psychological, then there is no reason for anyone to attempt to engage you in dialogue.
The intent of my question was to gather information, which is the intent of most of my questions. What is the intent of your interrogation?
Are you providing valuable information or just your opinion that my questions and comments are misguided? You are not obligated to either read or respond to my comments, so feel free to ignore them if they offend you.
To clarify: Todd’s post indicated he was an IRB member, not a study participant. That is the perspective I was interested in. Sorry for the confusion.
Science mom, I am addressing this comment to you. Your comments indicate a lack of knowledge about the scope of the Common Law and valid areas of concern for human research protection. I suggest you read the link I provided above, if you have an interest in the subject.
âNon-Federally Funded Research and Federally Funded Research Outside the Scope of the Common Rule. The Common Rule governs only research funded by agencies that have adopted 45 CFR 46, Subpart A. This limitation may be important, as it has been reported that industry, rather than the federal government, provides an estimated seventy percent of the funding for clinical drug trials conducted in the United States.â
âConcerns about the Common Rule have been expressed in a number of areas: The Rule does not apply to all federally funded or any nonfederally funded human subjects research; therefore, some research may be conducted without federal oversight and without protection for human subjects. Vulnerable populations may not receive adequate protection in research because Subparts B-D of 45 CFR 46, which are designed to protect children, prisoners, pregnant women, human fetuses, and neonates, have not been uniformly adopted by agencies other than HHS; in addition, the Common Rule does not contain provisions specific to research on minority populations, or to research on those with diminished capacity in emergency situations.â The paper goes on to explore other concerns.
I am trying to understand a complex topic, rather than just assume that it is a subject of no concern.
You’re clutching your pearls again and not answering my question, interrogation if you like, although you raised the issue, seems to me you would like to clarify what your question actually is.
You are dodging and it isn’t my lack of knowledge showing. True, there are others here that are more intimately acquainted with institutional review boards than I but you aren’t exactly dazzling me with your newly-acquired internet education. I am specifically interested in your concern that unethical human research is being conducted in the U.S. and what instances do you know of and why. Since, you know, you raised the question to begin with.
dodging what? what is it with the pearls at this site?
I wasn’t trying to dazzle anyone, least of all you, with my education. Just attempting to gather factual information. You are obviously not a good source in that area, though you are quick to offer petty opinions. Ho hum. Have a good weekend, or try to anyway.
Diatom, here’s a hint: the phrase “clutching your pearls” did not originate on this site. It refers to anal retentive fucks like you who are always just so upset about how other people are behaving.
My what a big vocabulary you have! You naughty boy.
I had to do a little research to find out what the pearl obsession was about at this site. Urban Dictionary says the pearl clutching phrase is popular with the âgay Maryland circleââ¦..can anyone verify this?
I’ve linked to these or similar articles more than once in the past, but in case anyone’s interested and unaware:
Who the fuck cares? Its an internet phrase. You are clearly not aware of all internet traditions.
Also, that response pretty much cements the phrases applicability to you.
Anyone who responds to the use of profanity with “naught boy” and comments about vocabulary really needs to take the stick out of their ass.
“No, and that wasn’t the concern, nor does it invalidate the concern despite apparently being true.”
Sorry, in 91 above, I meant that sentence to be read as ‘Wakefield apparantly got parental consent’, not ‘it’s apparently true he neglected to get parental consent’.
No, I for one can’t verify it, and I don’t really care. Why do you think this little item is worth mentioning?
Just curious as to where such inane comments originate. Don’t know if Urban Dictionary is at all reliable.
SC: Thanks, those are informative links.
is the anti-vaccine movement fizzling? Not a fucking chance given all the problems being uncovered!! hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahah…
Just curious as to where such inane comments originate.
The same place all your inane comments originate, I’d assume.
is the anti-vaccine movement fizzling? Not a fucking chance given all the problems being uncovered!!
– such as “What are we going to do with all these bananas?”
Can tou post a link diatom?
Don’t bother I found it…
” A new phrase among the gay Maryland circle”
So some group discovered a phrase that’s been around the net for years and started using it.
Your point is?
…and all that empty space..
You’re welcome. I’m sure you’ll spin them into something nonsensical in no time.
Are you trying to smear people by associating them with *gasp* homosexuality, diatom?
Some of which were probably harvested by poor, malnourished children. But you don’t see them having a rally about that.
I have explained my curiosity about the source of the pearl comment that was repeated twice here. My curiosity is no longer piqued. I have made no comments about bananas.
Put up a sign that says “All you can eat FOR FREE!!”. If they had done that at 3PM they would have had a real crowd, but what the people who came for free bananas would say about the rally might not be what they want to hear.
Not that I spent a lot of time on it, MSM doesn’t seem to have reported the event outcome. Even searching at the broadcast and some major newspapers, I couldn’t find anything.
Just curious again, would you consider that a “smear”? I made no such comment or implication. I asked a question. Some commentators here seem to be fond of taking others’ questions and running with their own fantasy mind-reading exercises. And then are quick to point the finger with the “judgment” label. Carry on.
Ah yes, the “I just asked a question” dodge.
Yes, you just asked a question. A stupid, asinine question that serves nothing but to deflect attention from your other asinine dodges.
You were just so, so concerned that some teacher somewhere used a dirty word, which is pretty much the definition of “pearl clutching”
Can you read? Was the “*gasp*” invisible to you?
The implication was in your bringing up that group specifically when the definition was plain. Why did you do that? What was the relevance of your question?
What? Who said you did?
[By the way, Google gives 1.3 million hits for “pearl clutching,” including a variety on the first page. It should be clear that it’s widely used on the internet.]
If you google “clutching pearls” the first hit is the UD entry with the Maryland comment as part of the definition. That is the source of my comment. I did not search all 1.3 million entries. But you can and will read whatever nefarious intentions you like into my questions.
Look, you’re clearly borderline illiterate. I mentioned specifically the variety of hits right on the first page. In any case, you’re not being truthful. You didn’t ask about the origins of the phrase, as you claimed; instead, you said
Of course, it was about three seconds of “research.” Even if you read what I bolded generously as the meaning of the phrase, you got that there (and from the snippets attached to the other hits on the first Google page without even having to click on them). Question answered. Then that entry claimed oddly that it was new among some group in 2007. Let’s say that you were dumb enough not to figure out its meaning from its use here (plausible) or to recognize from all of the Google hits how well established its use is on the internet, and that you thought people here have some connection – a shared obsession? – with the “gay Maryland circle” (whatever the hell that is). Why is this significant to you, such that you’d ask people here if they could verify that? How is your curiosity about the alleged obsession of people here now satisfied? Don’t answer that. I think there are enough hints about your motives, and that they are not innocent.
If you google “clutching pearls” the first hit is the UD entry with the Maryland comment as part of the definition.
Its goddamn Urban Dictionary, who gives a fuck what it says? Any idiot can put a definition up on UD.
Funny, that’s just how Vizzini sounded right after he took the iocane powder.
Orange Lantern wins! Thanks for the laugh.
The “made me spit coffee all over my laptop screen” award?
Orange Lantern,take a bow! I’m very very tempted to steal that one.
So, Diatom first starts by misinterpreting a blog post about someone to be a blog post by someone, then engages in silly little distracting word games to draw everyone off the main topic rather than admit error or even discuss the subject honestly.
In other words Diatom is a rabid anti-vaxer who, like Wakefield, has given up on any attempt to even sound “sciencey” because he/she/it know he’s/she’s/it’s incapable of providing any legitimate science-based evidence in Wakers’ defense.
Orac is right: The anti-vaccine movement IS fizzling, if somebody like diatom is the very best they can muster.
Anyone want to bet diatom is “augie” in disguise?
@ 151 Lawrence,
Interesting idea. St. Augustine did the dualistic, Manichean, thing for a while. diatom would be consistent with that.
Maybe a part of the signature could include, “Grant me reason and understanding, but not yet.”
SC and PW, your fantasy conjectures are inaccurate, but revealing (about you) all the same. SC you may be illustrative of a new sub-category of pearl clutchers: those reacting to a self-created phantom bogeyman.
I recommend finding happier fantasies.
Good-bye and happy dreaming.
Augustine AKA diatom?
I think diatom is the ‘nym of this guy:
Anyone can have it. Maybe “That’s what Vizzini said” can replace “That’s what she said” in skeptical circles.
If diatom is augustine, I would like to at least commend him/her for being somewhat more entertaining (as trolls go). Here, s/he seems to be somewhere between the “concern troll” and the “net nanny” — though it is odd for a net nanny not to understand the phrase “clutching at pearls”.
(As a public service, I will explain it. To “clutch at one’s pearls” is to become disproportionately upset at things like profanity or other uncouth behavior. A simile is the phrase “getting the vapors”, which evokes the image of a Southern belle unused to such common behavior.)
Apologies for the delay in answering; I was away for a few days.
First, let me state that I have not reviewed the literature on the effectiveness of IRBs, so statements I make are my opinion, based on the laws, as I understand them, and upon my experience. It should also be noted, as I mentioned before, that my understanding is based on U.S. regulations and may not apply to other countries.
From my own experience, the committee on which I sit has required modifications to protocols and associated materials (the informed consent form, ads, statistical methods used, etc.) that improve the ethical treatment of subjects. On certain rare occasions, it has even stopped research for which there is no ethical justification for it to start/continue or where serious ethical questions have arisen.
Whether my experience is generalizable to all IRBs, I can’t say. Nor can I state whether it reflects the conduct of most IRBs. But, from my perspective, it seems that the IRB review process does protect subjects and reduce unnecessary risk.
While the regulations at 45 CFR 46 do not apply to all human subjects research, they do cover the vast majority. Further, there are state by state human research laws, as well as institutional protocols governing research in humans. This creates a patchwork of rules by which researchers must abide and can lead to some confusion (generally getting more stringent as one progresses from general to site-specific oversight). I would say that more should be done to establish across-the-board regulations and guidelines for ethical review of research.
That said, as Federal oversight broadens from Federally-funded research and research specifically regulated by the government to include non-Federally funded, currently non-Federally regulated research, legislation must consider what are appropriate enforcement measures. Under current regulation, offenses can be punished by revocation of Federal funding and/or revocation of approval to conduct clinical research.
As others have said, though, if a researcher wants their study published, the majority of journals will require proof of IRB review (not to mention registration in clinicaltrials.gov) before they will publish.
Just to clarify, at a minimum, one member of a minimum of 5 members must have scientific expertise. It should not be expected that every member has scientific expertise, as the IRB is meant to represent not only the scientific and medical community, but also the “regular” people in the community around the institution. Of course, more is always better, as it would aid in understanding the validity of the questions asked or the procedures proposed. However, a good deal of the ethical questions can be evaluated even without a thorough understanding of the science involved, since the purpose is to ensure the ethical treatment of subjects, rather than evaluate the quality of science being conducted.
IRB regulation is a relatively new thing (only being established for a few decades, now). There is definitely room for improvement, and current quality can potentially vary by quite a bit. As it stands, though, nearly every institution that conducts research in humans, whether publicly or privately funded, whether for FDA approval or not, has an IRB. Even college students wishing to conduct a survey for their history thesis may need to get IRB approval before they can proceed.
The ins and outs of IRBs are irrelevant in this context (although still interesting): Wakefield’s research was in the UK and so subject to ethical approval there. This was never applied for, and nor would it have been given had the researchers asked it (the ‘research’ involved invasive, unpleasant and potentially risky procedures which were not in the clinical interests of the children involved). Getting parental consent is not enough.
But I’m sure diatom is aware of that already. Sigh.
I think understanding how IRBs work can be informative, but you’re right, the workings of U.S. IRB regulations doesn’t matter. I would be interested, though, in the perspective of someone who has served on a U.K. ethics committee and how such things are governed there.
Wade Rankin (remember when he used to be reasonable?) has a blog post up where he whines that there WERE SO at least 300 people at the rally, and that all you skeptics and internet wags are just lying, and there WERE SO more than 200 people there.
I’m not going to link to him, but if you google
Rankin SETTING THE RECORD STRAIGHT: A RALLY RECAP
you’ll find it. Strangely enough, none of his pictures seem to be evidence for that kind of crowd. Quite the reverse, in fact.
How much time and effort should he spend on trying to save the lives of people? Is there a limit? Because, frankly, it’s a hell of a task.
There are tons of stupid, arrogant bastards who ride herd immunity, sell homeopathy, practice woo-crap that does nothing but lighten wallets… They spend lots and lots of time peddling lies and ignorance…
And while Orac could just say “fuck it” and make money, like the woo peddlers, he’s doing the right thing instead. And for that, so many of us are grateful.
But, back to time. The thing is, if you’ve ever debated a creationist for example, you’d know that it takes a LOT, LOT, LOT longer to dispel a lie through the process of education than to tell the lie because of greed, stupidity and/or ignorance. A woo-Meister can spin out 10 lies/articles of bullshit faster than you can rebut the first point…
So, if you get involved in the arena, you’ve GOT to spend a lot of time. There’s no other way to counter-act the toxic stupidity and greed of the finalists, woo-meisters and lack-wits that make up so many of these movements and fads…