Action For Autism

Conflict of Interest - censoring the autism debate?

Conflict of Interest [COI] in scientific and medical research about autism is often misunderstood amongst members of the autism community and beyond. For a start there are many potential conflicts of interest. Most people think of financial COIs. If I am paid by a drug company will my research be biased in their favour? If I have patented a vaccine am I going to defend the entire vaccination programme? If I am being paid as an expert witness am I going to tailor my evidence to satisfy my paymasters?

But what if I am also a parent? Am I motivated by hope of financial security for my child to select research that supports my case in court? Do I have a deeper, psychological need to absolve myself of any guilt for my child’s condition? Bettleheim still casts a long shadow. Am I too emotionally involved to be objective?  And then there are autistic individuals engaged in autism research like Michelle Dawson and Larry Arnold. Where does their COI lie? Do we sometimes use conflict of interest to mean that you conflict with my interest?

And, as Larry argued both in his blog and in the comments on my earlier post on COIs, there are conflicts that arise because we all are individuals with a personal and cultual history and that history helps to shape the assumptions we bring to any subject.

The New McCarthyism? 

Here is an extract from Richard Horton’s book, MMR Science and Fiction in which he cites Ken Rothman:

Rothman not only questioned the importance of conflicts of interest, but also challenged the policy that many scientists and editors were then and now espousing - namely, disclosure as a measure to ameliorate the conflicts that will inevitably exist in all research.

Rothman claimed that the label of ‘conflict of interest’ was little more than a thinly disguised accusation of dishonesty. The idea that there was anyone in science - or in any walk of life, for that matter - who could obtain a position of pefect objectivity was obviously wrong. Everybody, in one way or another, approaches a subject with a prior point of view. By focusing solely on financial conflicts of interest, the self appointed guardians of science, (he means people like myself, the editors of journals) were undermining a long held principle that work should be judged only on its merits. ‘By emphasizing credentials,’ Rothman wrote, ‘these policies [of disclosure] foster an ad hominem aproach to evaluating science.’ [p70]

For some people, if you declare a COI you are automatically tainted and everything you have to say is deemed worthless. But that is silly. Anyone who declares a COI is not saying “I am not to be trusted.” Just the opposite in fact. You are being completely honest. Hiding a COI is more likely to make people question your honesty.

There was a study last year into the relationship between RhIg exposure in pregnant women and autism. According to a report in Medpage Today

The study was supported by a grant from Johnson and Johnson Company and ongoing autism research support from the Leda J. Sears Trust. Neither funding source was involved in the design and conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, or approval of the manuscript. Author conflicts of interest were not listed.

Johnson and Johnson are heavily involved in the manufacture of products that use RhIg. A cynic might argue that even though J & J had no direct influence on this study, the authors could have been tempted by the hope of future funding to come up with a result that pleased their patron.  I would argue the exact opposite. If everybody knows that J & J are funding your study and your results exonerate J & J’s product, you are going to make sure that everything stands up to scrutiny. It is only when you fail to list the connection that people get suspicious. 

That is the whole point. So-called COIs are inevitable in modern science. There would be very little research done without financial backing from industry. And what is the point of paying for lies? People talk about “big pharma” as if it were a single entity. This entity is made up of competing corporations. Even if J & J could buy a piece of research that exonerated their product, how long would it be before a rival corporation found a scientist to expose the flaws?

This brings us back to Rothman’s argument that all science should be judged on its merits and not on the supposed merits of its authors.  Most of us are not equipped to judge. Even within science the degree of specialization is so great that there may be very few scientists who can judge a piece of research on its merits. Professor Simon Baron-Cohen cites the case of Richard Borcherds in his book, The Essential Difference.  Borcherds was awarded the Fields Medal

for his work on a topic so obscure that most mathematicians working in his former Cambridge University department are unable to understand what he is doing. His mathematical brilliance is unquestioned by fellow mathematicians even if they cannot follow the specifics of his ideas. [p155]

Hence the importance of peer review, another much misunderstood concept. Publication after peer review does not automatically confirm the truth or falsehood of a piece of research or a theory. It tells us that a piece of work conforms to acceptable standards of scientific research and is taken seriously by fellow scientists who may go on to confirm or refute its findings in further studies.  

 When Rothman wrote Conflict of Interest, the New McCarthyism in Science? he had no way of knowing that 15 years later the aptly named Jenny McCarthy would be shouting down a respected pediatrician on national television while her supporters attempted to trash his reputation in the blogosphere. This is becoming a hallmark of the autism/vaccine camp’s response when legitimate science challenges their beliefs. They automatically seek to discredit the researcher rather than engage with him or her in a discussion of the research.

Over on LB/RB Joseph has written about a recent manifestation of this worrying trend. Dr Paul Offit has become a hate figure because he speaks up in favour of vaccination and is a patent holder for the Rotateq vaccine that he helped to develop. Anti-vaccine groups assume that everything he says about vaccine safety is a lie because he is defending his own financial interest.

Again this is astounding in its silliness. Even if doctors were only in it for the money you  make money from developing a safe vaccine. You lose money if your vaccine is unsafe. Even a hint of danger will get a vaccine pulled. Rotashield was a vaccine against the Rotavirus. It was very effective but may have led to an increase in the risk of intussusception. The risk was of the order of 1 or 2 cases per 10000. This was quickly picked up and the vaccine was withdrawn. Rotateq was developed by Dr Offit to replace it. It does not carry an increased risk of intussusception and both he and the Children’s Hospital of Philadelphia, where he is head of infectious diseases have benefitted from the royalties on this drug. Where is the harm in that? Anyone who reads Offit’s biography of Mauurice Hilleman, Vaccinated cannot fail to appreciate that both men’s commitment to vaccination is enirely honourable and motivated by a desire to alleviate human suffering.

Expert Witnesses

Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.

So says Safe Minds. There are two sides - parents and drug companies. Fombonne has made his choice and like Offit should be disqualified from further comment because of his “conflict of interest.” This is either an outstanding example of stupidity or it is rank duplicity. I suspect the latter. There is a world of difference between the experts who have a track record in their chosen discipline and are well qualified to offer expert testimony and those who make a career out of offering their services as expert witnesses without necessarily having the necessary level of expertise to be taken seriously. Mark Geier and Boyd Haley are a case in point. Fombonne and other experts like him are employed as expert witnesses because they already have a sound background in the relevant disciplines. They are not playing catch-up on the science in order to beef up their prospects of employment as expert witnesses. 

From McCarthy to McScience

One of the chapters in Horton’s book is entitled The Dawn of McScience. He argues that COIs can have a negative impact. When big money tries to  dictate the scientific agenda the result is often junk science. Horton cites the dispute between researcher Nancy Olivieri and drug company Apotex over the efficacy of deferiprone, a treatment for thalassaemia. Horton’s sympathies are clearly with the researcher. A more even handed view is presented by Julian Savulescu, Uehiro chair in practical ethics at Oxford University. Both seem to agree on the need for ethical oversight of the outcome of research, alongside the traditional ethical oversight of research proposals. The latter is designed to protect research subjects. The former would give a role to ethics committees in resolving disputes over the results of research, especially when those disputes pertain to patient welfare.

This could be made to work. It might overcome cynicism about big science and big money. It might even help to stem the tide of really junk science that is used to justify so much of the so-called complementary and alternative therapies out there.

In the meantime, if we are to call a halt to the McCarthyite use of COIs to bully and harrass scientific critics of the vaccine-autism connection, it seems only fair to me to hold its advocates to the exact same standards of honesty about potential COIs that they claim to uphold.

May 25th, 2008 Posted by Mike | Autism, ethics, science | 10 comments