Genetic testing on unborn babies to boom

MARIKA HILL
Last updated 05:00 05/08/2012

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Just a drop of a mother's blood can unlock an unborn child's genetic code and reveal thousands of potential defects, from autism to schizophrenia.

Now, a New Zealand-born scientist is predicting that the business of testing unborn babies for genetic disorders is on the verge of a boom.

Professor Armand Leroi, of Imperial College, London, told an international science forum in Dublin that the cost of unravelling an unborn child's genetic code would drop dramatically within a decade.

This opens up the prospect of routine testing for 3500 genetic conditions through a simple blood and saliva test of parents, and has prompted international uproar and claims of eugenics.

But the highly emotive debate over genetic testing is already playing out in New Zealand, with potentially international repercussions.

Mike Sullivan, spokesman for parent group Saving Down, is calling for an end to abortions carried out on foetuses carrying the Down syndrome marker.

The group held a eugenics seminar in Auckland yesterday.

Sullivan, who has a young daughter with Down syndrome, is taking the group's fight against genetic testing to one of the highest courts in the world.

The International Criminal Court (ICC) has agreed to hold a preliminary inquiry into the antenatal screening programme in New Zealand, he said, something which could have implications both here and overseas.

Saving Down wants any screening programme that prevents the birth of Down syndrome babies to be banned.

The Ministry of Health told the Sunday Star-Times that it has not received any notification or communication from the ICC.

Sullivan said he was also concerned by scientific advances allowing parents to have terminations if the unborn child had a variety of conditions, from asthma to autism.

"We're getting discrimination down to a science. It's a game changer. It has pretty tragic implications in how we respect human difference in that quest for what is perfect."

Sullivan said his daughter might take a little longer to reach development milestones, but that should not define her. "She's defined by the fact she's a daughter. We love her for that."

But another father of children with a genetic condition says the Saving Down perspective on genetic testing is a minority view.

New Zealand Organisation for Rare Disorders (NZORD) director John Forman, who has two adult twins with the genetic disorder alpha-mannosidosis, said it would be a very big call to deny people the choice to terminate a pregnancy.

"I would doubt that [view] was shared by the majority of families where they have a child with Down syndrome, let alone the rest of the community."

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Forman said a woman should have control over her own fertility, particularly if she knew the child had a pronounced risk of a severe genetic condition which would limit life expectancy to just a few months.

A test isolating an unborn child's DNA through a blood test on the mother would be welcomed by many, he said. "Anything that is reliable, safe and ethically sound we would support. They also have to be accurate.

"Why would you not support that?"

The views of these parents are just two in a spectrum, warned Social Anthropology senior lecturer Dr Ruth Fitzgerald.

She said many parents belonging to Saving Down and NZORD were nowhere near as hardline as they might appear publicly.

Fitzgerald also dismissed the fears of genetics, saying New Zealand had an extremely regulated environment for genetic testing compared with other countries.

Together with Julie Park, of the University of Auckland, and Mike Legge, of the University of Otago, Fitzgerald recently researched the troubling choices parents face through antenatal screening.

New Zealanders thought deeply about these issues and the moral implications, irrespective of what decision they came to, she said.

Some chose to abort, because they did not have the support network to deal with a high-needs child.

Other parents continued with the pregnancy, determined to raise the child no matter what genetic condition they carried.

"You just can't judge. You have to be in the family to know why."

- © Fairfax NZ News

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