New Scientist and the Autism Omnibus

New Scientist has published an interesting commentary on the Autism Omnibus  proceedings that are taking place in the United States Court of Federal Claims.  They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question  over whether or not she is the victim of vaccine damage.

New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.

Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ‘big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.

Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.

One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner  Harris, a reporter with the New York Times observed that:

It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.

I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.

It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.

The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.

And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.

He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.

So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.

Last time out he did not do so well. According to his biography on Wikipedia:

Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case[12] regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.

Amongst the criticisms in the judge’s decisions,[13] Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”

The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.

New Scientist also mentions Robert Nataf, a French chemist.

One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).

While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.

If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.

Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.

New Scientist concludes:

While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?

Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”

Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.

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Vaccines, Autism and Perception of Risk

This week’s New Scientist contains the first major discussion of the Autism Omnibus Proceedings that I have seen in the UK media. There are a few minor inaccuracies. For example the Omnibus is not just about thimerosal. There are three theories of general causation proposed by the Petitioners Steering Committee: thimerosal; MMR; thimerosal and MMR combined. And the case of Michelle Cedillo  with which the proceeedings have opened is based on the final hypothesis, that thimerosal containing vaccines administered in the first year of life damaged her immune system to such an extent that the MMR caused her to become autistic.

Leaving aside the particulars of  individual cases the New Scientist makes some important points. After outlining the preponderance of scientific opinion  against thimerosal as a causative factor in autism the New Scientist editorial goes on to say,

On the surface then, this looks like a battle between the reasoned arguments of experts and irrational parents. This is how health officials have interpreted vaccine disputes in the past, but in so doing they alienated the people they are meant to be advising.

In the UK, a similar debate kicked off in 1998, when scientist and doctor Andrew Wakefield cast doubt on the safety of the measles, mumps and rubella (MMR) vaccine. The response of the medical establishment was well intentioned but disastrous. Experts met behind closed doors and emerged to tell the public the vaccine was safe. Leaflets gave celebrity endorsements of MMR. Rather than examine Wakefield’s claims, which were shaky at the time and are now widely discredited, the government merely told parents not to be silly. Not surprisingly, parents did not buy it. Take-up of MMR fell from 92 to 82 per cent, close to the minimum level needed if isolated cases are to be prevented from developing into epidemics.

At the time of the MMR crisis I remember feeling patronized and my intelligence insulted by what seemed like another attempt to replace serious debate with a public relations spin job by the government and their officials. They made me want to believe Wakefield. And for a while I very nearly did. 

Let me be clear. I am not denying. that a small number of children do have adverse reactions to vaccines, sometimes with disasterous consequences. But prior to vaccines every child had adverse reactions to the diseases we vaccinate against and many of the outcomes were tragic. I speak as a survivor of measles, mumps and whooping cough. Today’s parents may be forgiven for failing to appreciate just how serious these diseases can be. The very success of the vaccine programme has led to complacency in this respect.

It has also contributed to the high level of risk aversion in the affluent societies of the world. In my grandparents time it was expected that some children would die. Around 100 years ago infant mortality rates in the USA and the UK were horrendous. One in ten children died before their first birthday. That would put the UK and the USA in the top ten for infant mortality today ahead of countries like Ethiopia and Sudan.

Vaccination rates have contributed to the steady decline in infant mortality. As it happens the current US figure of just under 7 children in a thousand for infant mortality is slighter higher than their rate for autism.

But parents do not consider statistical probabilities when making decisions about their child. When you sit in the doctor’s waiting room with a healthy 18 month old infant in your arms the chances of them dying in infancy are miniscule compared to the chance that they might develop autism. And if there were the tiniest doubt in your mind about the safety of childhood vaccines you would walk out of that waiting room.

In reality most parents have vaccinated their children with overwhelmingly positive outcomes. But for a minority of parents the doubt has been planted post hoc and some of them have thus been led into the logical fallacy of post hoc ergo propter hoc and blame the vaccines for causing their child’s autism.

The New Scientist suggests that the way to avoid this in the future is for scientists to be

open, and admitting what science does not know. It takes time and effort, but the alternative is that parents and health officials talk past each other.

I can see their point. For a long time science has been presented as the infallible source of truth, not by scientists but by opinion makers in politics and the media. A minority of scientists may have been seduced by this and others have challenged it. But I suspect that most have got on with the job, oblivious to the impact that reports of their work have on public opinion.

However, I am not convinced. Most people’s perceptions of science are not based on what scientists say, but on media reports of what they say. And the standards of science reporting in the popular media are frankly terrible.

This is caused by a mixture of ignorance and laziness that even affects magazines like New Scientist, for whom scientific ignorance should not be an issue. Yet too often they carry short reports based on pilot studies that are not yet ready for public consumption. These are then picked up by the non-scientific media and presented as “proof positive” when no such proof exists.

As an example of laziness, their main article on the Autism Omnibus proceedings contains a reference to mercury as “a known neurotoxin.” Amongst the anti-vaxers this carries the subtext, “They knowingly injected a neurotoxin into our children.” They did it on purpose, dammit!

Is there any circumstance in which New Scientist reporters would describe a substance as an unknown neuro-toxin? The phrase, known neurotoxin, is  code for a whole set of assumptions to which New Scientist certainly does not subscribe, but to which it gives unwitting approval by the careless use of language.

Overall, the New Scientist coverage is informed by support for the standards of scientific proof and rigorous criticism for those who fall short of those standards. At the same time it respects the sensibilities of those for whom autism and its causation is not primarily a discussion of scientific principle but a very personal and immediate issue. This discussion has focused primarily upon the issues raised by the New Scientist editorial. I hope to return to the substantive article tomorrow.

Autism Omnibus – a disaster for the families

After 5 years of delays and legal wrangling the Autism Omnibus proceedings have finally begun. Arthur Allen has blogged about the trial and in one of his posts asks the question, Are they seriously trying to win this case?  This is a good question. There are nearly 5000 children involved in the Autism Omnibus proceedings whose parents claim that either

  1. Thimerosal containing vaccines (TCVs),
  2. MMR,
  3. or a combination of the two

are responsible for their child’s autism. The omnibus amalgamates all their claims. The special masters presiding over the vaccine court will hear three test cases for each of these three potential causes. As I understand it they will decide whether these individual cases are the result of vaccine damage and award compensation accordingly. They will also decide whether the evidence in these cases supports the general theories of causation presented by expert witnesses for the claimants. If they do it will greatly ease the path of all the remaining claimants for compensation and probably bankrupt the vaccine manufacturers unless they are bailed out by the US government.

So you would expect the family selected to bat first for the claimants to represent their best shot, to be the most straightforward, indisputable case they had. You would also expect the expert witnesses in the case to be fully prepared and briefed for what is in effect a class action suit on behalf of nearly 5000 families.

Sadly, for the Cedillo family who stepped up to the mark for this historic hearing, this seems not to be the case. Left Brain/RightBrain and Autism Diva have written detailed discussions with extensive references to the transcripts of this opening case, which expose the weakness of the case presented by expert witnesses for Michelle Cedillo.

Michelle Cedillo’s is a tragic case. According to Arthur Allen

Michelle is very ill. In addition to her autism she suffers from inflammatory bowel disease, a seizure disorder and chronic eye inflammations that have left her 90 percent blind. She was pushed into the courtroom in a wheelchair because arthritis has left her unsteady on her feet, her mother testified.

But even if she wins, how can such an obviously sick child support a general theory of causation amongst autistic children who are not blind, suffering from IBS, siezures and crippled by arthritis? And it is a big if. The testimony of her expert witnesses is less than convincing. On the balance of evidence presented so far Michelle Cedillo could easily lose her case.

And what then for the family? Their daughter is seriously ill. Someone has persuaded them that her problems are vaccine related and that by pursuing this claim they will obtain the compensation that will guarantee their child’s future. The family have my complete sympathy. I do not blame the parents for believing their lawyers’ arguments and accepting the claims of these so-called experts. But if those lawyers and their expert witnesses are laughed out of court what will happen to the Cedillo family and all the other families relying on their case? Do the anti vax campaigners have their own Anti-Vaccine Injury Compensation Fund to help the families left high and dry in the wake of their failed agenda?