21 September 2009
Professor of Bioethics at Queen Mary University of London and Principal Investigator at the Centre for the Study of Incentives in HealthAppeared in BioNews 526
In recent years, we have come to understand more about the genetics of ASD. Although we are at a very early stage of understanding the biology of ASD, genetic research promises much. Some of the ways better knowledge of the genetics of ASD can help are as follows. First, because ASD is so diverse in how it affects people, in terms of the nature of the impairments they have, and in terms of the severity of those impairments, if we had a better genetic model of ASD we could get a better model of how people with ASD develop differently from people who are 'neurotypical'. Second, we could also begin to unpack the 'spectrum': it is quite likely that ASD as we currently understand it is in fact a family of related disorders with slightly different underlying mechanisms. Third, genetic information could help with diagnosing the condition. Fourth, if we can understand the genetics of ASD, and thus the biochemical pathways involved, we may be able to develop treatments which modify that development. Finally, we might be able to get an understanding of the risk factors which make it more or less likely that someone will have a child with ASD, which could inform reproductive decision-making.
All of this is controversial (2). Some of the controversies will be familiar to readers of Bionews. Any genetic research into behaviour faces charges of reductionism. And any genetic research in the field of disability and impairment faces difficult challenges: the relationship between 'disability' and 'difference', the respective roles of biomedical and social contextual factors in shaping the lives of people with impairments, the controversy over whether disability should be 'treated' or 'prevented'. Fears of eugenics are never far away. All of these issues are commonly discussed in the ASD community, both by parents and families, and by many people with ASD themselves. In addition to these issues, there are some debates which are specific to the ASD field: for instance, there is a perception in the ASD community that research funds are very limited, and that most of these funds are spent on research into the causes (particularly the genetic causes) of ASD. What many families with people with ASD say is that these scarce funds should be spent on research into interventions, rather than causes. Which interventions should be investigated is a topic of controversy, too: biomedical treatments to 'cure' autism? Educational interventions to help overcome the social impairments? Occupational therapies to overcome the sensory difficulties which commonly affect people with ASD? Each proposed shift of emphasis maps onto a different account of what ASD 'really is', what the problem is and who it is a problem for (3).
The leading autism researcher, psychologist Professor Simon Baron-Cohen, recently called for a more informed and open public debate on genetic research into autism. This is to be welcomed, and Progress Educational Trust recently received a grant from the Wellcome Trust to facilitate this debate. Genetic research clearly has a lot to offer. But we need to understand the role of genetic research in two contexts: first, the priority of genetic research vis-à-vis other types of biomedical, social, educational and policy research around ASD. And, second, the impact of genetic research: what is it used for, how is it understood by its various users, and how does it change how we think about ASD in practice? Put another way: what do we fear about genetics and ASD? And what fears does genetic research into ASD respond to? (4)
Richard Ashcroft is speaking at the events Age of Autism: Rethinking 'Normal' and From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autistic Spectrum in London in October, and is advising the charity that publishes BioNews, the Progress Educational Trust (PET), on its project Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders. He is coeditor of Principles of Healthcare Ethics (buy this book from Amazon UK or Amazon USA) and Case Analysis in Clinical Ethics (buy this book from Amazon UK or Amazon USA).