Possible test for autism raises calls for an ethical debate

Jan 12 2009

New research by British scientists means prenatal testing for autism is a possibility, but has evoked calls for an ethical debate on the issue.

A study by researchers at the autism research centre of Cambridge University has found that high levels of testosterone in the amniotic fluid of pregnant women was linked to autistic traits, such as a lack of sociability and verbal skills in their children by the time they reached age eight.

The research team followed 235 children from birth to the age of eight and the prenatal tests revealed a more than 20-fold variation in testosterone levels between different women.

After the children were born they were observed and tested on four occasions during their first eight years of life.

The groundbreaking study has raised the possibility of an amniocentesis test to detect autism - the same procedure is used to test for Down's syndrome - and this could give couples the option to terminate the pregnancy if an autistic disorder was detected.

But such a test would be is highly controversial and raise ethical issues for many.

Autism is a spectrum disorder famous for mathematical and musical savants as well as children who are unable to communicate and spend their lives having to be cared for, often in an institution.

Professor Simon Baron-Cohen, director of the research team believes society now needs to consider it's position on the issue and decide if a prenatal test for autism is desirable - he says a debate is needed on the issue as autism is a different kind of condition from Down's syndrome.

He says the research could lead to treatment for autism and some researchers or drug companies might see this as an opportunity to develop a pre-natal treatment as there are drugs that block testosterone.

While some people with Autism and Asperger's disorders are at the very high-functioning end of the spectrum, with significant powers of focus and concentration and a love of systems which may lead to extraordinary abilities in mathematics, far more have severe learning difficulties which have a profound effect on everyday life.

Professor Baron-Cohen says a prenatal test would not be able to distinguish which end of the spectrum and ethically the same issues apply wherever the person is on that spectrum. Professor Simon Baron-Cohen is one of the world's leading experts on autism.

The National Autistic Society however says some of its members think a test to predict autism could be useful in helping parents prepare and get support for their child as currently many children are not diagnosed for two or three years, which is a source of frustration, but none have said they wished it had been possible to have a termination.

The National Autistic Society says it is really important that the autism community is involved in developing research priorities in this area, as while there could be some advantages and benefits in recognising autism early, there are also concerns.

The Society says everyone with autism has the potential to make a unique and valued contribution and often it is not the autism which is a problem but a lack of services and support.

Vivienne Nathanson, head of ethics at the British Medical Association says a debate is needed over testing for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending and also over the more complicated ethical issue of treatment in the womb.

Autism is characterised by an inability to empathise and interact socially and an unusual focus on numbers or lists - both genetic and environmental factors are thought to contribute to autism.