Doubt over 'disability abortions'

In Britain, abortion of a fetus with a cleft palate stirs debate on danger of eugenics.

An Anglican priest is igniting heated debate here over abortion and what she derides as society's quest for physical perfection.

The Rev. Joanna Jepson is challenging the legality of a termination in 2001. The fetus, which was older than the legal abortion limit of 24 weeks, had a cleft palate.

The case, say some, goes to the heart of the delicate subject of eugenics, and whether modern society and the body-beautiful generation are too cavalier and interventionist in determining the future of unborn children.

The challenge is throwing the spotlight on Britain's vague abortion laws, which forbid terminations of fetuses older than 24 weeks, unless there is "substantial risk" of "severe handicap." As experts point out, this terminology is deliberately indefinite to allow doctors and parents the leeway to choose what degree of disability each individual family could cope with. But with technology making detection of abnormalities in the womb easier and earlier, some worry that pregnancies could be terminated for mild deformities.

"If a baby with a cleft palate can be aborted and that can be classed as a severe handicap, we do need to think about that seriously," Ms. Jepson says. She has launched legal action against the police for not prosecuting the doctors. The High Court gave her clearance earlier this month to pursue her case in the new year.

While praised by antiabortion groups, Jepson's challenge is raising alarm from abortion rights advocates, doctors, and others who say that so-called "disability abortions" are a matter of individual decision between parent and doctor. "It seems to me appalling that a third party can leap into the breach and bring a legal case," says Ann Furedi, chief executive of the British Pregnancy Advisory Service.

But Jepson says the entire system needs to be reviewed to stop the abortion of fetuses for what she sees as trivial reasons. The curate, who herself had a cleft palate that was later rectified by surgery in her teenage years, argues that the condition is only a mild disability, and hardly grounds for a termination. She says that she has led a perfectly happy and normal life and regrets that "the conduct of the doctors involved [in the current case] denied the baby these opportunities.

"This case raises the increasingly worrying concern of eugenics in our society," the curate says, adding that her case will force people to consider "the rights of the unborn who have other disabilities."

Doctors and abortion rights activists are aghast at the logic. Medical experts counter that a cleft palate can be a marker for a far more serious complaint that would either result in stillbirth or infant death. In the case in question, it is not clear how seriously affected the unborn child was.

Kypros Nicolaides, director of London's Foetal Medical Center, which conducts research and diagnoses into abnormalities, says it would be an impossible task to list every genetic and medical condition and define which is "abortable."

"The advantage of the [current] law is that it allows the doctors to work together with parents to deal with each individual case on its own merits," he says, adding that if a legal precedent is set in the Jepson case, it would bring grave repercussions for doctors.

"If a doctor terminates because a baby has Down syndrome, and someone else argues this is not a severe handicap and it goes to court and the judge agrees, then the doctor is retrospectively found guilty of a murder," Dr. Nicolaides says.

Abortion of a disabled fetus is a very different issue from early pregnancy terminations. By the time disability is diagnosed, the fetus may be as old as 20 weeks, and will normally be eagerly awaited and cherished by its parents. The mother-to-be is visibly pregnant and may have started to feel the baby's presence, and the families are expectant, often excitedly so. The termination, therefore, may be highly traumatic.

In short, says Ms. Furedi, it's an agonizing decision, not a casual one.

"Women do not request abortion lightly at this stage in pregnancy," she says. "It is something that is best decided by them and not the courts, politicians, or interfering religious people."

With fewer than 1,000 disability terminations in Britain each year, they constitute less than 1 percent of the 190,000 abortions conducted here annually. But some express concern that they could become far more prevalent.

Technological advances in genetics mean that all kind of disorders may be detectable in the womb. Antiabortion activists argue that this will lead to babies with potentially treatable disorders and genetic "markers" being "screened out."

Jonathan Bartley, director of the theological think tank Ekklesia, says that disability is so marginalized in society that few parents will choose to preserve "imperfect" fetuses. "We expect parents to make informed decisions, having never come into contact with disability," says Mr. Bartley. "Parents are going to be steered in the direction of abortion.

"It is a slippery slope," he adds. "It's quite clear abortions are happening for what can be very minor disabilities. You can't tell in the womb how disabled the child is going to be."

But the fear of rampant eugenics - the selective manipulation of births - may be premature.

Last month, a British government panel said embryo sex selection should be banned. Society is still a long way from offering people control over the physical attributes of their offspring.

Nicolaides, of the Foetal Medical Center, is not concerned that disability abortions are a natural precursor to eugenics.

"The argument that we are going down the slippery slope and having abortions because of our desire for [a certain] shape of face and body of our child is interesting because of the eugenics argument, but I never felt it was a real danger," he says.

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