OT - Down's tests urged to cut out disability

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http://www.timesonline.co.uk/article/0,,8122-1416230,00.html

Down’s tests urged to cut out disability

Dearbhail Mc

A LEADING obstetrician has called for the introduction of a national

screening programme to test foetuses for Down’s syndrome.

Carroll, a consultant at the National Maternity hospital in Dublin,

said a countrywide system would help to increase detection of unborn babies

with the disability. Ireland has one of the highest levels of Down’s

syndrome in Europe.

A recent survey conducted at the hospital revealed that two-thirds of older

mothers-to-be, considered most at risk, did not want to know if their child

would have the syndrome.

The women, 75% of whom were over 35 years of age, volunteered for a nuchal

translucency test, a type of scan which gives an early indication of the

likelihood of carrying a Down’s syndrome baby.

However, once the women were told that they were at risk, two-thirds

declined a further, more invasive test known as amniocentesis. Some were

concerned that the procedure, which involves the removal of tissue from the

foetus, would trigger a miscarriage. Others simply did not want to know or

felt the test was futile because abortion was not available in Ireland.

“A lot of women leave it to fate and just don’t want to know,” said Carroll,

who led the two-year study at the hospital’s Fetal Assessment Unit.

“Advances in screening means that we can assess a woman’s risk of carrying

Down’s in the early stages of pregnancy, and that is a great advantage.

However, there are no options for women in Ireland to terminate a pregnancy

where tests reveal a chromosomal abnormality.

“Down’s syndrome still comes as a shock to many parents and it is crucial

that women who are screened are counselled as to the implications of such

tests and what carrying a Down’s child means.”

Down’s syndrome is a chromosomal abnormality that affects the physical and

intellectual development of children born with it. An estimated one in 580

babies born in Ireland has the disability, a figure likely to rise as the

average age of first-time mothers climbs over 30. In Britain, where

screening is more commonplace, mothers often opt to terminate their

pregnancy if an abnormality is detected.

“More women want to know if they are carrying a child with Down’s syndrome,”

said Carroll. “Armed with knowledge they receive from friends, the internet,

even women’s magazines, a number of those women are prepared to travel to

terminate their pregnancy.

“Advanced prenatal screening is a doubled-edged sword. On the one hand, it

can lead to earlier detection and treatment of chromosomal abnormalities,

but often it can present parents with difficult moral dilemmas.”

Carroll nevertheless believes women who will be over 35 on their due date

should be offered prenatal tests to determine whether their foetus has the

disability.

“I think screening is a brilliant idea,” said Gaw, a Dublin mother of

four who has given birth to two children with Down’s syndrome.

She was not tested before giving birth to her daughter Tara, 6, who has the

syndrome, and underwent an NT scan and amniocentesis before giving birth to

her son on, 3, who also has the condition.

“It is such a shock to give birth to a child with a disability. Your head is

all over the place,” said Gaw, whose children have both undergone open heart

surgery. “Being prepared makes all the difference. It is impossible to be

sad once they are born because you love them so much.”

Some feel the risk of miscarriage, albeit minor, involved in the second,

more detailed test is one not worth taking.

“Why create an additional risk?” asked May Gannon, a counsellor for Down

Syndrome Ireland. “People assess the risk of miscarriage associated with

invasive tests against the need to know. For many mothers, the risk of

miscarriage is still too much, especially if they are not planning to have

an abortion.”

The morality of what are termed eugenic abortions, of unborn children with

disabilities, has been the subject of heated debate in Britain. It became

particularly controversial earlier this year after it emerged that up to 12

foetuses had been aborted late in pregnancy because they had cleft lips and

palates, minor disabilities that can be corrected.

“Why do we need national screening?” said Gannon. “People with disabilities

have the same right to life as everybody else. We cannot use advances in

screening techniques to get rid of children.”