Debate on ethics of antenatal screening is long overdue

The director of the UK’s Autism Research Centre, Professor Simon Baron-Cohen, has called for an ethical debate in the UK over the potential use of antenatal screening to test for autism after he led a group of scientists at Cambridge University to discover that high levels of testosterone are linked to autism.

According to The Guardian, Baron-Cohen said:

“If there was a prenatal test for autism, would this be desirable? What would we lose if children with autistic spectrum disorder were eliminated from the population? We should start debating this. There is a test for Down’s syndrome and that is legal and parents exercise their right to choose termination, but autism is often linked with talent. It is a different kind of condition.”

Baron-Cohen is no doubt correct about the contribution to society of people with autism compared to people with Down’s syndrome, but his apparent desire to separate the debate over screening for autism from screening for other birth defects is unfortunate.

As Sharon over at The Voyage notes:

“It’s also irrelevant that autistic people can have special talents that benefit society and that if there was a way of telling if a child could grow up to be (sarcasm) a useful, clever autist or a wasteful, stupid autist with absolutely nothing to offer (/sarcasm) the test would be more useful. Heck, if everyone had to prove their usefulness to society to be allowed to exist, the world’s population would take a big drop.”

Given the history of institutionalization and the ongoing ignorance of Down’s syndrome, society is only now beginning to understand what people with Down’s syndrome are capable of. In any case the debate over screening for autism cannot possibly occur in isolation.

The Guardian quotes Vivienne Nathanson, head of ethics at the British Medical Association, as saying. “The question, then, is are we comfortable with [testing] for a disorder which is life-limiting in terms of opportunities and experience, rather than life-ending?”

That description could be applied to Down’s syndrome as much as autism and yet there has never been a debate over the rights and wrongs of screening for Down’s or other chromosomal abnormalities. As Professor Joan Morris, director of the National Down Syndrome Cytogenetic Register, put it: “”There is no new argument here.”

I previously covered a research study on the attitudes of research ethics committee members towards screening for Down’s syndrome. As noted in that report “screening was introduced [in the UK] based on small scale preliminary studies and without ethical review.”

Indeed as Frank Buckley of DownsEd noted in November “there has been no parliamentary discussion or law on screening in Britain”.

I am sure that screening for Down’s syndrome is here to stay – medical advances cannot be reversed, but it is important that we as a society consider why that screening occurs and whether the results are desirable.