Spare parts child or saviour sibling?

MICHELLE DUFF
Last updated 05:00 05/10/2014

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A woman is pregnant with New Zealand's first "made-to-order baby," chosen for its genetic makeup to save its sibling's life.

The baby was selected from other IVF embryos as a genetic match for its sick older sibling and will donate stem cells at birth.

Critics say the process is a slippery slope towards treating children as commodities.

The cells will be harvested from the baby's umbilical cord blood and used as a transplant for the older child, which might save it from life-threatening sickle cell anaemia. The parents already have several children, and the sick child is the oldest.

The creation of Baby X comes as outgoing Health Minister Tony Ryall approves the expansion of genetic testing, which will open the door for doctors to select "saviour siblings" to help save existing children sick with certain diseases.

The parents of Baby X were given approval to use IVF to test and select an embryo to genetically match their sick child by New Zealand's ethics committee for reproductive technology (Ecart).

The couple's doctor, Fertility Associates Dr Mary Birdsall, confirmed the mother is now in the second trimester of her pregnancy.

Under the procedure, fertilised IVF embryos are tested for genetic compatibility to the sick child. Only the embryo which will result in another child who is a genetic match - and from whom stem cells can later be harvested - will be implanted in the uterus.

Until now, this kind of testing - known as pre-implantation genetic diagnosis, or PGD - has been used to screen for inherited disorders.

This is the first time it has been used in New Zealand to find a tissue match for an existing child with a heritable illness. And new guidelines will allow its use to find a match for a child with any serious illness - for example, leukaemia.

In considering the couple's application for Baby X, the Ecart committee "clarified that the couple intend to have another child even if there are no [tissue] matches". It was unlikely a donor could be found outside the family.

Birdsall said the process took around six months. "This couple became quite frustrated with the time delays . . . as their sick child grew closer every day to needing a transplant."

Whether the couple would have had another child anyway was "the cause of ethical debate," dealt with by Ecart.

Concerns about the psychological welfare of a child born for a specific purpose have been raised by researchers and critics. United States author Jodi Picoult covered these complications in her book My Sister's Keeper, made into a movie starring Cameron Diaz, where character Anna grapples with the knowledge she was born to save her sister.

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Voice for Life criticised the creation of "made to order babies". National president Bernard Moran said he understood a parent's desire to go to any lengths to save their child, but it was morally wrong.

"We realise that it's done with the best of intentions, but at the end of the day you're cannibalising a little human person who has no say in the matter. I'm afraid I have to object to that."

"Choosing" the right embryo was too much like playing god, he said. Each embryo that was discarded was a potential person.

But advisory committee for reproductive technology acting chairwoman Alison Douglass said families who want to create a saviour sibling would have to go through a rigorous ethics committee vetting process. Tissue donation between siblings did have benefits, and the new guidelines provided safeguards.

"This is not a rubber stamp."

Otago University bioethics researcher Dr Jeanne Snelling said the technology was not new and in the United Kingdom, the first saviour sibling transplant was carried out in 2010. Toddler Max Matthews saved his nine-year-old sister, Megan, by donating his bone marrow.

"I think it's an exciting thing for this family that they've been able to do this," she said.

CONTROVERSY GREETS GENETICS LAW

A draft law expanding use of genetic testing for saviour siblings sat with former Health Minister Tony Ryall for at least eight years until he approved it shortly before leaving office.

The advisory committee for reproductive technology (Acart) first consulted the public about expanding pre-implantation genetic diagnosis testing in 2007, with draft guidelines given to then-Health Minister David Cunliffe in 2008. They allow for the harvesting of bone marrow - along with umbilical cord blood - and its use to find a tissue match for children with any disease.

Some against the proposal said there was "deep discomfort," in the community about "this type of reproductive relationship." There was worry about the implications if a transplant to the sick child did not work, or if pressure was later put on the child to donate other organs.

One submitter was concerned parents in the future might feel pressured to have another baby simply to cure their sick child. But most people agreed the interests of the resulting child should be protected, and the condition of the sick kid had to be severe enough to warrant the donation. These stipulations have been written into the guidelines."We don't think there will be a great rush of applications, but the procedures and safeguards are there to take advantage of the benefits reproductive technology can bring," Acart acting chairwoman Alison Douglass said.

Pre-implantation genetic diagnosis is still banned outright in some cases, such as testing for sex and other physical traits.

- Sunday Star Times

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