Monday, September 12, 2011

Europe Screening Out 'Imperfect' Children, Bioethicist Warns

People with genetic diseases are disappearing in Europe because of genetic screening, abortion and attitudes that exclude them from social life, an Italian bioethicist has warned.

“We realize it when we look around. We no longer see ‘imperfect’ children who are marked by genetic disorders,” neonatologist Dr. Carlo Bellieni wrote in the Sept. 9 issue of the Vatican newspaper L’Osservatore Romano.

“In a scared and prejudiced world, the search for imperfection and the destruction of the ‘imperfect’ patient become a common well-known social norm: a banality of evil which does not seem to bother anyone,” said Bellieni, who is the secretary of the bioethics committee of the Italian Pediatrics Society and a member of the Pontifical Academy of Life.

“These children are censured by the media, sheltered by families from a society which does not accept them despite many claims, and above all (they) are victims of abortion.”

He recounted how abortion targets those with genetic conditions.

In France, 96 percent of fetuses with Down syndrome are aborted. One Parisian deputy asked why four percent still are not aborted.

The abortion rate of fetuses with Down syndrome is above 60 percent in the northern Italian province of Emilia Romagna, one of Italy’s few regions which keeps reliable statistics. More than 50 percent of unborn girls with Turner Syndrome, a condition which causes shortness and low fertility, are also aborted in the region.

“The first case involves delayed intellectual development and the second delays physical development,” Bellieni noted, asking how that could be “reason enough” to destroy the unborn.

Prenatal genetic screening, ultrasounds and other tests for Down syndrome and other diseases are increasing, he said.

Parents and doctors who believe in “the sacredness of the human person” should reflect on why there is time for an abortion but “absolutely no time for treatment.”

Bellieni also blamed the disappearance of the genetically disabled on both society’s inability to accept cultural difference and the “shame” of families who feel like “genetic outlaws” and keep their children inside.

He said that prenatal selection and social exclusion helps prevent research therapies from being developed.

“If economic investments were made to cure genetic disorders equal to those made to prevent sick children from being born, we would make notable progress,” he said.

While genetic disorders are undesirable, “they should not make the affected person undesirable.”

Though their victims may face a difficult life, he asked, “are they truly so unbearable as we are made to believe?”

Studies have shown that sick people with good external conditions rate their quality of life higher than their peers, whether they are adolescents with Spina Bifida or those with serious physical disabilities. Quality of life for those with Down syndrome is “much higher than the media illustrates.”

“The media traces a portrait of disability which rarely strays from sterile compassion,” Bellieni charged.

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