Balancing interests in autism study

Abstract

Confusion and controversy loom large whenever autistic spectrum disorders are discussed. A major review commissioned by the British government should sort the facts from the legends, hopes Michael Gross.The raging debate on whether or not the combined measles, mumps and rubella (MMR) vaccine can trigger the onset of autistic spectrum disorders (latest research suggests it doesn't) has demonstrated one thing very clearly: that there is a lot of uncertainty and misinformation about autism, a condition that affects 0.1% of the population. Parents of autistic children know how difficult it is to filter any meaningful information from a stream of dubious reports on miracle cures, horrifying increases in case numbers, newly identified causes, and new theories. Short of a cure, weeding out the information jungle would be a major step to make life easier for everybody involved. Similarly, a future-oriented research policy capable of tackling the disease would need to be based on a clear understanding of what can presently count as established knowledge, and what is mythology.In response to this problem, the British government has recently commissioned the Medical Research Council (MRC) to provide a report on the present scientific knowledge about the epidemiology and causes of autism. The MRC has set up three expert panels and a ‘lay group’ consisting of people involved with autism in non-academic ways.There is first the case definition and epidemiology group. This group will have to address questions such as whether the apparent increase in case numbers over the past decade is an artefact of shifting definitions, or whether there is a real ‘epidemic’. If the increase is real, then there must be biological causes for it, which may be found in the remit of the physiology and infections group which has possibly the trickiest task, including the MMR question along with other possible environmental influences on the condition. While there is a clear genetic component to autism (around a dozen genes are thought to be involved), the disorder is also linked to bowel malfunctions, which led to theories that blame the symptoms on food ingredients such as milk proteins or gluten. Finally, there is a group dealing with psychology and behaviour. As the psychological ‘causes’ of autism postulated in the 1950s have by now been ruled out completely, and educational provision is excluded from the remit of the review, this last part of the review is likely to stir less controversy than the others.Of the six ‘lay group’ members, two are associated with each of the review groups. The panels’ membership sparked some controversy. Andrew Wakefield, the researcher who claimed that the MMR vaccine triggered autism, was said to be concerned about the fact that four members, including two academics and one lay group member serving on the physiology board, had been involved in the court case brought against manufacturers of the MMR vaccine by parents. The view that this constitutes a conflict of interest, however, did not prevail.The report should become publicly available by the end of this year. MRC research boards will consider the results with a view to convert its suggestions into actual research that will put an end to decades of confusion.Michael Gross is a science writer and consultant based at the Oxford Centre for Molecular Sciences. He can be contacted through his web page at http://www.michaelgross.co.uk.