Genetic Tests Urged To Cut Out Disability

By Dearbhail McDonald

A leading obstetrician has called for the introduction of a national screening programme to test foetuses for Down’s syndrome.

Stephen 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 Mary 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 Harrison, 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.”

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