Studying autism genetics responsibly
By Simon Baron-Cohen (Professor of Developmental Psychopathology at the University of Cambridge)
This article forms part of a School Resource Pack created by the Progress Educational Trust (PET) as part of its project Spectrum of Opinion: Genes. The article incorporates links to an accompanying Glossary of terms, and is followed by a list of 10 key words, phrases and names and a set of Questions to consider. A more extensive version of the article can be found on PET's BioNews website.
Classical autism and Asperger's syndrome are two subgroups on the autismspectrum. People in both subgroups share difficulties in social relationships and in communication, alongside unusually narrow interests and a strong preference for predictability. These conditions are neurological and strongly - although not 100% - genetic. The two subgroups are differentiated by the presence of language delay and/or learning difficulties in autism, and by the absence of these in Asperger's syndrome.
Some people with Asperger's syndrome worry that research into the genetics of the condition will be used to develop prenataltests that will lead to its eradication. Their worries are not unfounded, given that such prenatal testing is already possible and being used in this way in relation to other conditions, for example Down's syndrome. This leads in turn to worries about eugenics, which was fashionable within the medical profession in the first half of the twentieth century in the USA and in parts of Europe, but which turned into a horrific nightmare as it was integrated into the policies of Germany's Nazi government during the Second World War. The Nazis attempted to produce an Aryan race that was genetically pure, even if it meant exterminating those who were different. This included those who were ethnically different, or different in their sexual orientation, or different by virtue of having disabilities.
Some argue that genetic research into autism can lead to such policies, if not as part of an organised eugenics programme, then at least by making available a prenatal test that parents might use to make their choice as to whether to continue or terminate a pregnancy. In this discussion, we need to keep an eye on the perspective of the parent, and an eye on the perspective of the child who may go on to develop autism. These perspectives are not inevitably opposed, since some parents would be offended by the idea that autism might be eradicated.
There are ways in which genetic research into autism can be conducted responsibly, so as to alleviate these worries. One way is to make clear why the research is being conducted. At our laboratory in Cambridge, for example, we make it clear that we wish to advance knowledge of the causes of autism and Asperger's syndrome, and that our agenda is not to eradicate autism. Another way is to consider non-eugenic applications of basic research. These might include early detection, so that families and their children are given the right support at an earlier stage, instead of waiting for many years without support. Another way might be to use genetic research to develop a medical treatment, although this may raise new ethical issues.
In the best-case scenario, a medical treatment would alleviate any symptoms that cause suffering, while leaving those aspects of autism that are positive to flourish. Autism involves positive as well as negative features, the positive features including excellent attention to detail and the ability to focus for long periods of time on a narrow topic. New treatments therefore need careful evaluation, to consider their potential unwanted side-effects.
While genetic research is still a long way from identifying which specific genes are necessary and sufficient to cause autism and Asperger's syndrome, it is important to debate this research before it could be used or misused. Such debate might result in legislation and regulation. I for one am pro-diversity both socially and in terms of genetics, and believe that people with autism or Asperger's syndrome have the same right to life as anyone else.
10 key words and phrases
If autism has positive as well as negative features, is it correct to think of it as a disease?
Is it meaningful to have a debate about a genetic test that doesn't exist yet?
What (if any) connection is there between the history of eugenics, and a person today deciding that they would prefer not to have an autistic child?