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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.

Autism Science Foundation: a Research based org

30 Apr

We need more quality research in autism, no doubt about that. Private organizations can fund/manage this. But, there are Research Organizations and ‘research’ organizations.

I was interested to see the new autism organization emerge–the Autism Science Foundation. Kev has already discussed introduction of the ASF.

When I saw ASF’s webpage, I was immediately drawn to the paragraph on their scientific advisory board:

ASF’s Scientific Advisory Board, still in formation, includes Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School; past program chair of the International Society for Autism Research); Dr. Ami Klin (Yale Child Study Center); Dr. Harold Koplewicz (NYU Child Study Center); Dr. Sharon Humiston (University of Rochester); Dr. Eric London (NYS Institute for Basic Research in Developmental Disabilities and co-founder of NAAR); Dr. Catherine Lord (University of Michigan); and Dr. Matthew State (Yale Medical School).

There are some well-known names in there. Dr. Catherine Lord, for one, is a real heavy hitter in the autism world. There are some other names that were new to me, so I decided to do a quick check on them. One measure I use is how many papers a person has in Autism. To measure this, I used the ISI Web of Knowledge database. I searched for papers with the person in question as author and with topic=autism. I checked number of papers and number of highly cited papers. Keep in mind that not all papers get listed by ISI. But, it is one way to measure how active someone is in autism.


Dr. Emanuel DiCicco-Bloom

Six papers found in the ISI database under the topic “autism”. This out of 58 papers total, many very well cited. He is also past chair of INSAR.

Dr. Ami Klin

32 papers on autism. Six of which have been cited over 50 times. That is impressive. He has six autism papers published in 2008–so he’s currently active in research.

Dr. Harold Koplewicz

He’s at the NYU child study center. I don’t get any hits for him as an author with the subject=autism in the ISI database. He does have a long publication record, though.

You may recall his name. Dr. Koplewicz and the NYU Child Study Center was behind the “Ransom Notes” advertisement campaign that didn’t go so well.

Dr. Sharon Humiston

She is affiliated with the University of Rochester.

I don’t get any autism publications from her in my search. What I do get in a Google search is that she testified with Jeffrey Bradstreet and others in Senator Dan Burton’s hearings on vaccines and autism. She welcomed the call for research into whether MMR or thimerosal were causing autism–so claims that she doesn’t have an “open mind” don’t apply here. However, she has been very clear on the idea that there is no evidence linking vaccines to autism. She does have a number of papers on immunization, as well as a book Vaccinating Your Child: Questions and Answers for the Concerned Parent.

Dr. Eric London

I get four autism papers for Dr. London in the ISI database. One of which, The environment as an etiologic factor in autism: a new direction for research shows that this is also someone who has demonstrated an “open mind” to the the idea that environmental causes could be important in autism etiology. But, I expect he doesn’t get much credit for that in the vaccines-cause-autism world since he doesn’t like the “correct” version of environmental etiology.

Dr. Catherine Lord

46 papers on autism, with 17 papers cited over 50 times. Wow, 1/3 of her papers are very highly cited! That is impressive.

Her bio includes this statement of awards:

Lord is Chair of the Early Intervention in Autism Committee, National Academy of Science. She received the Irving B. Harris Early Childhood Lecture Award in 2004 and was a Finalist for the New York University Child Study Center Scientific Achievement Award in 2005.


Dr. Matthew State

Dr. State is from Yale. I only get 3 papers from him in my search. One of which, though, is in Nature Genetics and has been cited 178 times. If you aren’t familiar with the Nature journals, I’ll point out that these are highly prestigious journals. Suffice it to say, nothing in the “vaccines-cause-autism” research world has even come close to a journal of this caliber.

This is a pretty good group for a brand new organization–one that is still growing. We will have to wait to see what the Autism Science Foundation does, but for now it appears that, yes, there is a new research based autism organization in town.

The problem with the IACC is…

27 Apr

…that Tom Insel is too nice.

OK, that is as oversimplification, but bear with me. Dr. Insel is the director of the NIMH (National Institutes of Mental Health) and the chair of the IACC (Interagency Autism Coordinating Committee). As chair, he gets to run the meetings. Lucky him!

I say that with tongue planted firmly in cheek. Dr. Insel has a tough job trying to manage the IACC.

Let’s back up a little bit. The IACC committee meets regularly to work on producing a plan for the government’s research effort in autism. The idea is simple–gather together a lot of people who can bring their expertise to the table and work together to build a good plan.

Unfortunately, Lyn Redwood apparently didn’t get that memo. Ms. Redwood represents her organization (Safe Minds) as well as the views of a number of other autism organizations who promote the idea that vaccines caused an epidemic of autism.

Lyn Redwood spends each meeting as though it is held for everyone to listen to her talk about vaccines. I know that sounds like an exaggeration–it isn’t. Here is a quote from another member of the IACC committee from a recent meeting, speaking about an effort by Lyn Redwood to insert a large amount of new language into the Strategic Plan.

I’m just a little perplexed as to why we are actually looking at this. Because we worked so hard over many months as a committee and..you know..and as one person in the field who is constantly seeing more and more children with autism this sense of urgency seems to sabotaged by this constant barrage of another opportunity for one person of this committee to constantly try to rewrite the Plan. It doesn’t seem to be the correct process.

Dr. Insel then commented “There are heads shaking here.” “Heads Shaking” is what Dr. Insel says when people are nodding in agreement during a meeting. In other words–a large portion of the IACC agreed with the idea that Lyn Redwood was hijacking the process again!

The problem is, to say it again, Tom Insel is too nice. He gives Lyn Redwood a LOT of leeway to talk about…well, whatever she wants to talk about. Unfortunately, she spends a lot of time talking vaccines. Lots of time. The IACC doesn’t have lot’s of time to spend on any one subject. Especially a subject like vaccines that the rest of the committee clearly isn’t interested in discussing. To make matters worse, many of the discussions are nearly meaningless. “Should we phrase this noncommittal statement this way or that way?”

Another person draining a lot of valuable time from the IACC is Mark Blaxill. Mr. Blaxill is not on the main IACC committee. He is in one of the working groups (think advisory group to the main committee). While, luckily, he doesn’t get to vote in the main committee, in his own way he is worse than Ms. Redwood. He makes long speeches, filled with insults to the other committee members, calling those who don’t agree with him “Epidemic Denialists”.

It strikes this listener that Ms. Redwood and Mr. Blaxill are trying desperately to engage the other IACC people in a debate on the autism vaccine question. Ms. Redwood has offered to bring in papers supporting her position. Thankfully, Dr. Insel avoided that mess. I can easily imagine many of the researchers on the IACC thinking, “Gad! I already wasted part of my life on that junk science when I read it the first time. Can’t we just get something accomplished for people with autism here?” I mean, seriously, does Ms. Redwood think that people haven’t read the papers she leans on? The implications sounds like, “You don’t agree with me. That means you haven’t read these studies.” What she doesn’t understand is that pretty much everyone has read the studies she uses as support for the “mercury and vaccines caused an autism epimic” idea. Everyone has read them, and most who have read them find them to be really bad science. The academics could use them as examples of bad science for their students. Those studies are that bad.

Here’s some much needed background. The IACC committee is made up of a number of professionals and stakeholders. People fly in from all over the US to attend meetings–most of which are only a day long. The agendas are packed; there isn’t much time to waste.

Rather than accept that IACC meeting time is limited and precious, with many topics to cover, both Ms. Redwood and Mr. Blaxill act as though they are in one of Senator Dan Burton’s hearings, where the goal was to get as much of the idea that vaccines cause autism into the public record as possible–whether the science was good or not.

So, what’s happening while Ms. Redwood or Mr. Blaxill are talking? This is where the “Tom Insel is too nice” bit comes into play. Dr. Insel, chair of the IACC, allows them all the time they want to take (and they want a lot of time) to talk about vaccines. I don’t know how much of it is Dr. Insel being polite or how much is an effort to stave off future complaints that the vaccine lobby was excluded from the process. There are likely multiple reasons. Net result–lots of time taken up talking about vaccines.

Well, that’s not really accurate. There is a lot of time lecturing about the supposed vaccine/autism link. You see, there is almost no discussion amongst the commitee. Just the one-sided presentations by Lyn Redwood and Mark Blaxill. The rest of the IACC members often (almost always) remain silent. My guess is that they are just too smart to get dragged into the discussions. Yes, too smart. What purpose would it serve?

From what I can see, the rest of the IACC “gets it”. They “get it” in the fact that they already understand the vaccine debate. I don’t see the point in taking up committee and working group time with Lyn Redwood or Mark Blaxill pretending to be trying to educate the other members. The rest of the IACC also “gets it” in the fact that they understand to avoid getting sucked into the debate. Mark Blaxill would likely enjoy some blog fodder. The likes of David Kirby and Robert Kennedy Jr. would love to take everything out of context and misinterpret it for their own blog readers. All this would come at the cost of people with autism.

Dr. Insel could, I guess, limit the time that Ms. Redwood and Mr. Blaxill use. To be honest, he does manage their time somewhat, but much more would help keep the meetings productive. Dr. Insel is in a hard spot–even a reasonable level of limiting the discussion would obviously be used to fuel complaints that the vaccine debate is being quashed or the process is corrupt.

So, in the end, Dr. Insel plays the nice guy. What else can he do? Lyn Redwood and Mark Blaxill take advantage of it and, in the end, it is people with autism who pay the price when the IACC meetings are hijacked and the sense of urgency is lost as one person tries to rewrite the strategic plan.

Richard Deth – gambling man

27 Apr

Maybe you don’t know, or have forgotten who Richard Deth (pronounced to rhyme with ‘teeth’) is.

He is:

Richard Deth, Ph.D., is a neuropharmacologist, a professor of pharmacology at Northeastern University in Boston, Massachusetts, and is on the scientific advisory board of the National Autism Association. Deth has published scientific studies on the role of D4 dopamine receptors in psychiatric disorders, as well as the book, Molecular Origins of Human Attention: The Dopamine-Folate Connection. He has also become a prominent voice in the controversies in autism and vaccine controversy, due to his theory that certain children are more at risk than others because they lack the normal ability to excrete neurotoxic metals.

Deth became ‘hot property’ in the anti-vaccine autism groups after publishing a paper (with which there were numerous issues – see Bart Cubbins excellent video for details) that was funded by one of those anti-vaccine groups – Safe Minds. Interestingly, during an exchange with Kathleen documented at neurodiversity.com, it also came to light that Richard Deth was registered as a paid expert witness in the vaccine litigation omnibus proceedings. Professor Deth said:

“I thank you for alerting me to the fact that my name was included on that expert witness list. It was done so without my knowledge or permission. It might be related to a phone call from that law office that was logged to my office while I was away on vacation in February. I never returned the call.”

To which Kathleen replied replied:

“It was quite an oversight for the attorneys to fail to confirm your willingness to serve in that role prior to naming you as a plaintiffs’ expert in the Petitioners’ Initial Disclosure of Experts, and filing that document with the Court of Federal Claims. However, their certainty is understandable, given your indication during our brief telephone conversation that the lawyer with whom you discussed the matter was “Andy” Waters, lead attorney in the thimerosal cases.”

Deth didn’t comment any further. As many have discovered, if you want to go head to head with Kathleen you better make sure your i’s are dotted and your t’s are crossed.

One of the statements Deth made during their exchange stood out to me at the time.

…I would like to make a virtual wager that within the next 18-24 months scientific evidence will make the thimerosal-autism link a near certainty. If you are willing, I’ll let you name the stakes.

Deth sent his email on March 22 2006. Luckily for him, Kathleen took pity on him and declined his rather gauche offer.

So what does this mean? What does it prove?

Why, nothing. Nothing at all. I just wanted LB/RB readers to be perfectly clear that a strong _belief_ in a scenario doesn’t make one right. In fact, when we look at all the recent evidence for the various beliefs of the various anti-vaccine/autism groups – from the prediction that the Omnibus Autism cases would be a walkover for them, to David Kirby’s certainty that thiomersal causation would be vindicated by CDDS data in 2005, then 2007, to this example of ego from Richard Deth what we see is a clear picture of a set of people who are consistently and unerringly wrong. This is because they simply cannot see the science right in front of them. Even such an august figure as Richard Deth, Ph. D.

Jennifer Lopez adds vocal support

25 Apr

In an interview with ‘Good Morning America‘ Jennifer Lopez stood up for vaccinations by talking about a new campaign and website. The website is very accomplished and features Ms Lopez talking about how to protect your baby from Whooping Cough.

The interview itself contained the following on vaccines:

She’s also raising awareness about pertussis, the potentially fatal disease better known as whooping cough.

Visit www.soundsofpertussis.com to find out more about the vaccine.

Pertussis cases were virtually nonexistent in the United States after a vaccine was developed. Reported cases of whooping cough hit a low of about 1,000 in 1976. That number has been on the rise over the past 30 years, and in 2005, 25,000 cases were reported, according to the Centers for Disease Control and Prevention. According to a CDC study of the disease, Hispanic infants were particularly hard hit by the disease, though there is no clear reason why.

Immunization from the whooping cough vaccine wears off over time, usually between five and 10 years, so adults can spread the highly contagious disease to infants.

Lopez said babies most often contract the disease from their parents, and it can go undetected. “We’ll be OK, but it could be fatal to the babies,” she said.

The Sounds of Pertussis campaign educates adults about getting a Tdap booster shot, which protects against tetanus, diphtheria and pertussis.

Lopez joins other responsible parents and celebs Jennifer Garner andAmanda Peet in making sure everyone knows that these vaccines are safe and available.

Liar Liar

24 Apr

Jim Carrey and Jenny McCarthy are very critical of vaccines. They assert that vaccines cause autism.

Criticising vaccines is a dangerous business. Vaccines are arguably one of the greatest, if not the greatest, medical advances in history. Anyone whose causes people to stop vaccinating their children runs the risk of being blamed for illness, permanent injury and death if/when the diseases return.

Mr. Carrey seems aware of this. In his recent blog piece he made a point of noting:

We have never argued that people shouldn’t be immunized for the most serious threats including measles and polio

This statement bothered me enough that I discussed it in two pieces (here and here) about measles outbreaks in Wales and the US.

I wanted to highlight the fact that the website for Mr. Carrey’s organization (Generation Rescue) includes language specifically telling people to avoid the measles vaccine.

Even after blogging that, somehow Mr. Carrey’s statement statement still bothered me. Then I remembered why.

A year ago, Mr. Carrey’s movie, “Horton Hears a Who”, was in theaters. One group in New Mexico decided to offer a screening of Horton with an added benefit: free vaccinations for children who came.

This didn’t sit well with Mr. Carrey, who decided to put a stop to the free vaccination program. According to Lisa Akerman of TACA (Talk About Curing Autism, another group that has had Jenny McCarthy as a spokes-person):

Once word from the autism community (Who-ville in this case) got to the Carrey & McCarthy super team about this story of a New Mexico vaccination plot things got a brewing. After his morning coffee, Jim made a few calls this morning on behalf of the autism community.

Following a long discussion with his representatives at Fox Entertainment – Who-ville – once again through Horton – was heard. The New Mexico test market of drive thru vaccines while at the movies with your children was stopped. Halted by Horton himself…

So, Mr. Carrey doesn’t “argue” that people shouldn’t be immunized. He just stops them from being immunized.

Fallout of the vaccine-autism scare: Measles in Wales

24 Apr

Jim Carrey, Jenny McCarthy, Andrew Wakefield…what do these people have in common? They have all helped promote fear of vaccines–especially the Measles/MumpsRubella (MMR) vaccine–by claiming there is evidence vaccines cause autism.

To be fair, Jim Carrey and Jenny McCarthy relatively new to the scene, unlike Dr. Wakefield, whose flawed research really fueled the fear. Perhaps the actors could learn from the doctor’s lesson: you claim MMR causes autism, that reduces the number of people getting immunized and people get sick. Pretty simple logic.

Measles was considered basically wiped out in the UK until a few years ago when it returned, sickening thousands and killing a few. Last year, measles returned to the US, and it’s back this year. Now we see that the UK isn’t being spared int he 2008-09 season: Wales has approximately 60 cases of measles suspected or confirmed.

Nineteen cases are in Llanelli–that’s in the lower left corner of this map:

Map showing location of recent measles outbreak in Wales

Map showing location of recent measles outbreak in Wales

That’s a short ride from Swansea, Cardiff, Bristol…lots of high density population centers. Any reasonable person would find that scary.

We in the autism communities need to stand up against misinformation that leads to people being sickened and, in some cases, killed. The MMR-Autism link never had good evidence, and now there is good evidence that MMR does not cause autism Even people like the autism-is-vaccine-injury proponent Rick Rollens admitted it’s time to look beyond MMR (and here).

Jim Carrey seems to understand at least on some level that it is wrong to dissuade people from vaccination. He claimed (incorrectly):

We have never argued that people shouldn’t be immunized for the most serious threats including measles and polio…

Maybe there is some Clintonian logic about the words “We” and “argued”. But, on Larry King Live, Jenny McCarthy stated:

You need to find a doctor that can find an alternate schedule. Generationrescue.org has three of them on there.

Generation Rescue, aka “Jenny McCarthy and Jim Carrey’s Autism Organization” has alternate schedules on their website. The “favorite” of the three alternate vaccine schedules states, very clearly,

One should avoid vaccines that contain live viruses. This includes the combined measles mumps and rubella vaccines…

You’ve talked the talk, time to walk the walk, Jim. Pull that schedule off your website. Get your organization to make a clear statement about the value of vaccinating against measles.

I realize that I have concentrated a lot on Jim Carrey in this piece. But, there is a man who can make a difference in the future. That future will see people in the US and the UK sickened by measles. The question is how many. What Jim Carrey says could make that number larger or smaller, it all depends on whether he makes good on his sentiment that measles is a serious disease worth immunizing against.

Dr Jay Gordon, HIPAA violation? Really?

23 Apr

We’re back to the Huffington Post again and this time rather than Jenny McCarthy’s boyfriend, we’re talking about Jenny McCarthy’s son’s doctor Dr Jay Gordon.

He recently blogged about an LA Times piece by fellow medical man Dr Rahul Parikh. In his piece Parikh said:

One night, we admitted a 9-month-old girl who was having trouble breathing. She arrived with her parents — Mom in tears and Dad tense with worry. Her parents were movie stars from a Hollywood borough who…needed nothing. In a way, they had chosen “nothing” for their daughter from the time she was born — refusing all vaccines for her.

From this information alone Dr Gordon decided that Dr Parikh:

…commits ethics and HIPAA violations so egregious that the Medical Board must take him to task

Interesting, I thought as I read on…

Dr. Parikh is a well-published medical author and blogger and he speaks of a patient he saw as an intern in the year 2000 at Cedars-Sinai Medical Center. (His bio on many sites lets you know that year.) He identifies the parents, their unique profession and their child’s age and illness. This family can be identified by anyone who can use Google.

I was confused by now – Parikh hadn’t mentioned the year (in fact *Gordon himself* did!), he hadn’t identified the parents and as for their ‘unique profession’…how is being a movie star from Hollywood in any way unique? Surely Hollywood is full of movie stars? I mean, I’m a Brit so maybe I’m just buying into a cliché – are there really not many movie stars in Hollywood? And as for identifying the child’s age and illness – a 9 month old with a repository infection? Is that massively uncommon? I don’t think it is.

I stopped reading at that point as I have never been Dr Gordon’s biggest fan. He lacks the balls to tell Jenny McCarthy she’s wrong about there being anti-freeze in vaccines (silliness repeated by Jim Carrey yesterday) amongst other things. I was now more interested in this ‘ethics and HIPAA violation’.

False modesty aside I’m pretty good at digging at information on search engines and try as I could (and I really did try), based on the info in Parikh’s piece, I could not for the life of me identify who the movie stars were whos daughter was ill. I still can’t.

However, finding out what constitutes a HIPAA violation in terms of identifiable data was very much easier. I hit gold on my first search. According to the site ‘Lawyers and HIPAA‘ a violation occurs when health information is made public – here’s the paragraph on health information and its public release:

Individually identifiable health information is information that is a subset of health information, including demographic information collected from an individual, and:

(1) Is created or received by a health care provider, health plan, employer, or health care clearinghouse; and

(2) Relates to the past, present, or future physical or mental health or condition of an individual; the provision of health care to an individual; or the past, present, or future payment for the provision of health care to an individual; and

(i) That identifies the individual; or

(ii) With respect to which there is a reasonable basis to believe the information can be used to identify the individual.

I simply cannot see how Jay Gordon realistically believes that the information in Rahul Parikh’s LA Times piece meets that criteria.

Update: I see Autism News Beat has covered this also. In the comments Dr Gordon appears and says:

Good points. I’ve removed the nastier comments in the HuffPo piece. The Internet lends itself to false bravado and unpleasant ad hominem attacks [please see above 🙂 ] and I have to work on not being part of that problem.

I stand by my original unhappiness at the inaccurate proclamation of whooping cough

Yet when I return to Dr Gordon’s Huffington Post entry, I still see the references to HIPAA violations. Does Dr Gordon really believe that Dr Parikh’s article is full of HIPAA violations? Yes, I’m a Brit and no, I’m not a lawyer but my common sense tells me that Dr Gordon is playing with fire here. Lets hope for Dr Gordon’s sake that Dr Parikh is not going to sue for defamation. According to Autism News Beat that would be distinctly on the cards.

Fallout of the vaccine-autism scare: Measles in the US

23 Apr

I thought we dodged the bullet this year in the US–no measles outbreaks like in 2008.

Then I read the Baby411 blog. Today’s post:

Several states are reporting measles outbreaks across the country this week, but particularly on the East Coast.

The following states are reporting confirmed cases of measles:
Iowa
Pennsylvania
Washington DC
Maryland
Virginia

So far, six cases in the Washington DC area, for example.

A very valid question is, “why bring this up on an autism blog?” Unfortunately, the autism community is tied to the measles vaccine scare. So, yes, I hang some of the responsibility for this outbreak on Dr. Wakefield for his terribly flawed research.

I also hang responsibility on Jenny McCarthy and Jim Carrey. Jenny McCarthy has been promoting her organization’s “alternative” vaccine schedule that gives no coverage for measles.

Here’s a quote from their “alternative”schedule:

One should avoid vaccines that contain live viruses. This includes the combined measles.mups and rubella vaccines…

Just today, her partner, Jim Carrey in a blog post denied this:

We have never argued that people shouldn’t be immunized for the most serious threats including measles and polio

Sorry, Jim, you can’t have it both ways.

Let’s hope this outbreak stays small.

Professor Simon Baron-Cohen Speaks

22 Apr

Professor Simon Baron-Cohen of Cambridge University’s autism research team wrote a piece for New Scientist recently about media distortion:

WHEN media reports state that scientist X of Y university has discovered that A is linked to B, we ought to be able to trust them. Sadly, as many researchers know, we can’t.

He talks about the Observer debacle of 2007 and how that paper made a total hash of leaked data. At the time Baron-Cohen said:

The draft report, he says, “is as accurate as jottings in a notebook”

The big furore was that the paper was working on prevalence rates and mentioned a few rates of autism from 1 in 58 to 1 in 200. Guess which one the Observer decided was the more newsworthy? Baron-Cohen again:

Baron-Cohen says their study of Cambridgeshire children, which has been running for five years, comes out with a range of figures from one in 58, to one in 200, depending on various factors. The draft report, he says, “is as accurate as jottings in a notebook”. He adds that the data is with public health officials, who are crunching the numbers.

So it was really a total non-story. Some scientists were working on a paper about prevalence and had some unadjusted figures. At that point, someone in the team decided to leak the unadjusted report to the press who swallowed it hook, line and sinker.

Fast forward to last month and the Daily Mail runs a story:

Researchers now believe as many as one in 60 children has some form of the condition.

Up and down the blogosphere at the more credulous blogs and news pages the 1 in 60 figure is touted about. Indeed, only yesterday on the Age of Autism John Stone was claiming Baron-Cohen’s silence about the Daily mail article in his New Scientist piece as proof definite that the 1 in 60 figure was accurate:

The most significant thing about Simon Baron-Cohen’s recent New Scientist grouse about media irresponsibility and science (HERE) was that he did not mention the publication just a few days earlier in the Daily Mail of his latest – if long delayed – figure for the prevalence of autism in the UK school population of 1 in 60….

Given the importance of this figure – a true rate 66% higher than formerly acknowledged – the long term reticence of Baron-Cohen and the study’s sponsor Autism Speaks UK is dismaying – indeed Science Media Centre and Autism Speaks UK were still apparently trying to deny it to the Mail ahead of publication of the article.* But the silence of all these parties, and most particularly of Baron-Cohen after the Daily Mail article came out suggests that they did not have a leg to stand on.

When John Stone speaks with certainty in his voice, that is a certain clue that something is not as it seems. So I decided to email Professor Baron-Cohen to get his take on the Daily Mail. After a chat about what it meant he obliged me with an exclusive quote:

The Daily Mail was irresponsible in reporting on the results of our study before it was published in a scientific, peer-reviewed journal and where the details of the study are publicly available for scrutiny. The study will be published in the British Journal of Psychiatry on June 1st 2009.

My own opinion based on the discussion we had and that quote is that the paper might not be quite what it appears from the abstract posted at IMFAR. At any rate Professor Baron-Cohen is right that the Daily Mail have – just like the Observer – acted very irresponsibly. So are those that are reporting a UK prevalence of 1 in 60. Irresponsible and very previous.

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