The Big Question: Should mothers be offered screening for autism, and what issues would it raise?


Why are we asking this now?


A pre-natal test for autism moved a step closer yesterday with the announcement by scientists at the University of Cambridge that high levels of the male hormone testosterone in the amniotic fluid surrounding the foetus in the womb may serve as an early warning signal of the condition.

Researchers led by Prof Simon Baron-Cohen, the autism expert, say the discovery raises the possibility that an amniocentesis test similar to that performed for Down's syndrome could be offered to mothers in the future.



Does this raise new ethical issues?

Professor Baron-Cohen seems to think so. He called for an ethical debate so that society could decide where it stood on the issue. "Would [a test] be desirable?," he asked. "What would we lose if children with autistic spectrum disorder were eliminated from the population? 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."



Is Prof Baron-Cohen right?

No. Even if Professor Baron-Cohen's putative test were to be developed – and all that has been demonstrated so far is an association between testosterone levels in the amniotic fluid and autism – it would not be suitable for screening the whole population of pregnant women.

Amniocentesis involves the insertion of a long needle through the abdomen into the womb through which a sample of the fluid surrounding the foetus is extracted for testing. The procedure is not without risk – it carries a one per cent chance of triggering a miscarriage – and can only be justified where the chances of uncovering a birth defect such as Down's syndrome are similarly high.



So who should the testbe offered to?

A small number of selected mothers judged to be at high risk of having an autistic baby based on family history or previous children already born with autism. The test would only be performed by request – it would not be routine. (The difference with Down's is that there is a simple blood test that can be performed that gives an estimate of the risk of the condition, which can then be confirmed by amniocentesis. There is no blood test – existing or proposed – for autism.)

Might the test lead to the elimination of people with autism?

No, because it would not be used to screen the whole population of pregnant women. Screening for Down's is much more widespread, and in 92 per cent of cases diagnosed couples opt for a termination. But that has not led to the elimination of people with Down's syndrome. Although autism runs in families, suggesting a strong genetic influence, it also occurs spontaneously in families, making it impossible to predict. The benefit of a pre-natal test would be to offer to parents who have already experienced the burden of living with an autistic child a chance to have a second or subsequent child unaffected by the condition. For these families it would be a godsend – offering them a choice.



Why is Prof Baron-Cohen worried?

There is a critical difference between autism and Down's syndrome, he says, which is that in some cases autism is linked with genius – displayed in an obsessive interest in mathematics or engineering or music. Newton and Einstein were almost certainly autistic and the idea that people who were not only valuable members of society but also important contributors to its future might have been eliminated before they were born raises uncomfortable questions. Should medicine offer the opportunity to eliminate a foetus who may turn out to be a person of such importance, he asks?



Is this a valid argument?

Many may find the suggestion that some human beings are more valuable than others, and more worthy of being preserved, distasteful. One commentator yesterday suggested it came close to "Nazi-style eugenics". On this argument, all human beings should be valued equally, and they should never be discarded simply because they are difficult, eccentric, don't confirm to "norms", or cause inconvenience to others. That would be to interfere with the natural diversity of the human race.



What do other experts think?

Professor Joan Morris, director of the National Down Syndrome Cytogenetic Register, which records all Down's births, said there was no ethical distinction between testing for Down's or Spina Bifida (already offered in pregnancy) and testing for autism. "There is no new argument here," she said. Testing for each condition raised the same issues over the ethics of selecting foetuses for termination. All three conditions are life limiting (with the exception of severe spina bifida ) rather than life threatening.



Why does autism provoke such strong views?

The condition exerts a grip on the public imagination. In the social world in which we live, the capacity to read situations and respond appropriately is crucial to successful human interaction. Autism disturbs something that is core to our being human. First identified in 1943, autism has attracted increased interest in the past decade. Some suggest this is because, compared with other disorders such as Down's, people with autism look "normal" and are easier to identify with.



Is autism increasing?

Hard to say. With its defining symptom being "an inability to read social situations", it is not simple to diagnose. In people of high intelligence it may go unrecognised for years – even throughout their lives. As understanding has improved the diagnosis has expanded, and experts now refer to "autistic spectrum disorders" including Asperger's syndrome, to include those less severely affected. People with these milder disorders, sometimes described as "mind blindness", are thought to number 500,000. Of these, 100,000 are estimated to be of low IQ and to need support while the remaining 400,000 are of average or high IQ and are mildly affected. The severest kind of autism is thought to affect about 30,000 people in the UK.



Are there wider issues involving embryo screening?

Yes. Routine testing of pregnant women of the sort discussed here only covers a couple of disorders – Down's and spina bifida – and possibly in the future autism. But for a small number of women – those considering IVF – a whole raft of possibilities is opened up, through pre-implantation genetic screening. The first baby to be born in Britain after being screened for BRCA1, the breast cancer gene, was announced last Friday. It is now possible to screen for almost 200 inherited defects, including Huntingdon's disease and cystic fibrosis, by taking a single cell from the developing embryos, testing it in the laboratory, and then replacing those embryos in the womb that have been shown to be free of the defective gene. Opponents argue that this is another step towards eugenics – the selection and disposal of "imperfect humans.

Is it desirable to screen unborn children for autism?

Yes

*Only those at high risk of autism through their family history would be offered the test

*Autism would not be eliminated because the test would not be offered to every pregnant woman

*It does not raise different ethical issues from those raised by testing for Down's syndrome

No

*It could lead to the elimination of some of the greatest minds capable of shaping our future

*A whole range of individuals who add to the diversity of human nature might be lost

*With a large number of people – 500,000 – mildly affected the impact of a test could be huge

News
The Banksy image in Folkestone before it was vandalised
people
Life and Style
tech

Sales of the tablet are set to fall again, say analysts

Sport
Louis van Gaal at the Hawthorns prior to Manchester United's game against West Brom
football

Follow the latest updates from the Monday night Premier League fixture

News
i100
PROMOTED VIDEO
Arts and Entertainment
Bloom Time: Mira Sorvino
tvMira Sorvino on leaving movie roles for 'The Intruders'
News
Brian Harvey turned up at Downing Street today demanding to speak to the Prime Minister
news

Met Police confirm there was a 'minor disturbance' and that no-one was arrested

Arts and Entertainment
George Lucas poses with a group of Star Wars-inspired Disney characters at Disney's Hollywood Studios in 2010
films

George Lucas criticises the major Hollywood film studios

Voices
Chris Grayling, Justice Secretary: 'There are pressures which we are facing but there is not a crisis'
voices

Does Chris Grayling realise what a vague concept he is dealing with?

Life and Style
A street vendor in Mexico City sells Dorilocos, which are topped with carrot, jimaca, cucumber, peanuts, pork rinds, spices and hot sauce
food + drink

Trend which requires crisps, a fork and a strong stomach is sweeping Mexico's streets

News
Blackpool is expected to become one of the first places to introduce the Government’s controversial new Public Space Protection Orders (PSPOs)
news

Concerns raised phenomenon is threatening resort's image as a family destination

Life and Style
gaming

I Am Bread could actually be a challenging and nuanced title

Latest stories from i100
Have you tried new the Independent Digital Edition apps?

Day In a Page

Oscar Pistorius sentencing: The athlete's wealth and notoriety have provoked a long overdue debate on South African prisons

'They poured water on, then electrified me...'

If Oscar Pistorius is sent to jail, his experience will not be that of other inmates
James Wharton: The former Guard now fighting discrimination against gay soldiers

The former Guard now fighting discrimination against gay soldiers

Life after the Army has brought new battles for the LGBT activist James Wharton
Ebola in the US: Panic over the virus threatens to infect President Obama's midterms

Panic over Ebola threatens to infect the midterms

Just one person has died, yet November's elections may be affected by what Republicans call 'Obama's Katrina', says Rupert Cornwell
Premier League coaches join the RSC to swap the tricks of their trades

Darling, you were fabulous! But offside...

Premier League coaches are joining the RSC to learn acting skills, and in turn they will teach its actors to play football. Nick Clark finds out why
How to dress with authority: Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear

How to dress with authority

Kirsty Wark and Camila Batmanghelidjh discuss the changing role of fashion in women's workwear
New book on Joy Division's Ian Curtis sheds new light on the life of the late singer

New book on Ian Curtis sheds fresh light on the life of the late singer

'Joy Division were making art... Ian was for real' says author Jon Savage
Sean Harris: A rare interview with British acting's secret weapon

Sean Harris: A rare interview with British acting's secret weapon

The Bafta-winner talks Hollywood, being branded a psycho, and how Barbra Streisand is his true inspiration
Tim Minchin, interview: The musician, comedian and world's favourite ginger is on scorching form

Tim Minchin interview

For a no-holds-barred comedian who is scathing about woolly thinking and oppressive religiosity, he is surprisingly gentle in person
Boris Johnson's boozing won't win the puritan vote

Boris's boozing won't win the puritan vote

Many of us Brits still disapprove of conspicuous consumption – it's the way we were raised, says DJ Taylor
Ash frontman Tim Wheeler reveals how he came to terms with his father's dementia

Tim Wheeler: Alzheimer's, memories and my dad

Wheeler's dad suffered from Alzheimer's for three years. When he died, there was only one way the Ash frontman knew how to respond: with a heartfelt solo album
Hugh Bonneville & Peter James: 'Peter loves his classic cars; I've always pootled along fine with a Mini Metro. I think I lack his panache'

How We Met: Hugh Bonneville & Peter James

'Peter loves his classic cars; I've always pootled along fine with a Mini Metro. I think I lack his panache'
Bill Granger recipes: Our chef's heavenly crab dishes don't need hours of preparation

Bill Granger's heavenly crab recipes

Scared off by the strain of shelling a crab? Let a fishmonger do the hard work so you can focus on getting the flavours right
Radamel Falcao: How faith and love drive the Colombian to glory

Radamel Falcao: How faith and love drive the Colombian to glory

After a remarkable conversion from reckless defender to prolific striker, Monaco's ace says he wants to make his loan deal at Old Trafford permanent
Terry Venables: Premier League managers must not be allowed to dictate who plays and who does not play for England

Terry Venables column

Premier League managers must not be allowed to dictate who plays and who does not play for England
The Inside Word: Brendan Rodgers looks to the future while Roy Hodgson is ghost of seasons past

Michael Calvin's Inside Word

Brendan Rodgers looks to the future while Roy Hodgson is ghost of seasons past