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Publisert 17. april 2002 | Oppdatert 17. april 2002

Sydney, Australia - An Australian state has given a couple the green light to have a "designer baby" whose stem cell-rich umbilical cord blood will be used in an attempt to cure an existing child with a rare and potentially fatal blood disease.

Pro-life campaigners say the case, the first of its kind in Australia, is another grave step towards a society in which human beings are regarded as commodities, while human embryos that don't make the grade are discarded. Although pro-life advocates prefer obtaining stem cells from umbilical cord blood rather than from destroying human embryos, human life would be destroyed in this case in order to find the "perfect baby."

Roman Curkowskyj, whose three-year-old daughter Christina suffers from Fanconi's anemia, defended the decision Tuesday, saying any responsible parent would do the same.

Curkowskyj and his partner, Tania Kutny, have been given the go-ahead to screen embryos during in-vitro fertilization (IVF) treatment, to enable the selection of one that will both be free of the faulty Fanconi anemia gene, and also have the exact type of tissue cells needed to treat Christina.

As with "leftovers" from IVF treatment generally, the Kutny-Curkowskyj human embryos that are created but not implanted in the womb will either be killed or frozen.

A transfusion from a perfectly-matched sibling is the only known effective treatment for Fanconi anemia. It is hoped blood from the IVF baby's umbilical cord will help his or her sister's bone marrow to regrow.

Children with the disease invariably die before the age of ten, and Kutny said she was told at Christina's birth she could die as early as three.

Permission for the procedure, known as pre-implantation genetic diagnosis (PGD), came from the Infertility Treatment Authority in the couple's home state of Victoria. Four other Victorian couples are hoping for the go-ahead too.

The Authority's chief executive, Dr. Helen Szoke, told Australian radio each individual case had to be approved by an ethical advisory panel, as the procedure "clearly" raised ethical concerns.

The most obvious one, she said, related to the purpose for which the child was being conceived.

"There's quite a lot of ethical debate about whether this is the commodification of a child or whether the child exists in their own right. The first guiding principal of our legislation is that the interest of the person who is to be born is paramount."

Nonetheless, critics of the decision said they weren't sure this would be the case.

"Assuming there is a child that results [from the IVF treatment], what if it's found that in fact the cord blood isn't a perfect match?" asked Australia Right to Life national president Margaret Tighe Tuesday. "What will be the attitude toward the child then?"

Tighe also raised another concern. "What would be the child's attitude if when he or she grew up they realized that they were produced to benefit their sibling?"

Szoke of the Infertility Treatment Authority said the approval had been given because the case involved treatment for a terminally-ill sibling of the baby-to-be. Permission would not be given for the procedure to be used in an attempt to cure a sick adult, she added.

"You couldn't use it to save a wife or husband with leukemia, for example."

But Right to Life expresses little confidence in such assurances. The decision, Tighe argued, had set a dangerous precedent.

"The scientists are saying they wouldn't want to use this for older family members, but we've heard those stories before.

"When the first IVF baby was born in Melbourne [in 1980], the scientists assured us they would never store embryos, never discard them, never experiment on them. Over the years, all of those things have happened. I believe the assurances they give us now wouldn't be worth the paper they're written on."

Similarly, Tighe said, today's assurances about never allowing human cloning were unlikely ever to hold.

"The problem is, we've opened a real Pandora's Box with reproductive technology, by developing a class of human beings who are manufactured in laboratories and who are treated like manufactured objects."

Asked whether she was concerned that pro-lifers would be seen as heartless in opposing procedures that could save a little girl's life, Tighe said she had every sympathy with the couple and the child, "but this way of treating the child was ethically unacceptable."

"I was asked [in a television interview], if that was my child, wouldn't I want to see my child cured? But while it might be tempting, I couldn't use my children in this way."

Christina's parents have shrugged off criticism, saying that they had planned to have another child anyway.

"We're not harvesting body parts," Kutny said. "We're using blood that would normally be thrown away."

In August 2000, a Colorado couple, Lisa and Jack Nash, gave birth to an IVF baby conceived in a Minneapolis laboratory with the aim of helping treat their six-year-old daughter, also suffering from Fanconi anemia.

It was the first time PGD had been used for the expressed purpose of ensuring a perfect stem-cell donor.

Last February 11 the Nash family passed the 500th day since baby Adam's cord blood was transplanted into his sister, Molly. According to the family's website, Molly is doing extremely well.

Some commentators said at the time the case was publicized that it marked a "slippery slope" towards a future in which children can be selected for desirable traits such as intelligence or athleticism.

The Society for the Protection of Unborn Children described PGD and the rejection of unsuitable embryos as "fatal discrimination, which should not be tolerated in any civilized society."
17. april 2002