Original story at: www.heraldsun.news.com.au
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Design baby
Couple Wants to screen embryo for use in treating terminally ill sibling
By ROBYN RILEY, Medical reporter
2001.12.23

A VICTORIAN couple wants to have a genetically engineered " designer " baby to save their dying first child.

The toddler will die of a rare blood disease before it turns 15 and its only hope of life is a 'perfect match' bone marrow donation from a sibling.

The child's parents want Victoria's Infertility Treatment Authority (ITA) to grant doctors permission to create the " saviour " child using specialized IVF technology.

Professor Alan Trounson, deputy director of the Monash Institute of Reproduction and Development, said the institute was ready: " We only need ITA approval. "

The IVF technique, called pre-implantation genetic diagnosis and which is legal, involves testing a three-day-old embryo for inherited genetic disease.

Where the procedure steps outside approved guidelines is when the embryo is also screened to make sure it is a perfect tissue match for its sick sibling.

David Cram, director of genetic services at Monash, said the Melbourne couple were one of several who had approached the clinic wanting this IVF procedure made available.

" There are also two families in Tasmania, one in New South Wales and two from New Zealand with seriously ill children in need of bone marrow transplants, " Dr Cram said.

" They want to create an embryo that could save their children.

" We are in the process of making a formal application to the ITA on their behalf. That will happen early in the New Year. "

Professor Trounson accepts the proposal may attract criticism, but said what cannot be overlooked is that the request is a genuine attempt to save a child's life.

" In this case, the family will have a second child who will be loved, and the relationship between the siblings would be intense, " Professor Trounson said.

" It is not simply a child created from a loving act, but also one created on the basis that you also love a child who is seriously ill. "

The child, whose family does not want to be identified, is dying of Fanconi's anaemia, the disease which threatened the life of American toddler Molly Nash last year.

Her parents were the first in the world to successfully create a genetically engineered baby to save the life of another child.

The Nashs, from Colorado, now have a son, Adam.

Life-saving cord blood stem cells from Adam went to sister Molly, who has now made a full recovery.

The procedure did not harm Adam, Professor Trounson said. " The blood was taken from his umbilical cord after birth. It was not invasive. "

But argument is expected over the moral, ethical and legal aspects of creating a child to be a donor for another.

Adam Nash was " selected " as a three-day-old embryo because he had the genetic ability to save his sister.

He did not have Fanconi's anaemia and was a perfect tissue match to Molly.

Fanconi's anaemia is a rare disorder affecting fewer than 3000 people globally. It weakens the immune system and leaves the victim susceptible to cancer.

Untreated, it will kill, but it can be cured through a bone marrow transplant from a donor with a perfect tissue match.

It is impossible for an unrelated donor to be a perfect match.

The Melbourne couple heard of the US success and they want to be allowed to create their own " made-to-order " baby.

In an Australian first, they will make a formal request for permission to screen embryos in Victoria to make sure they are not only free of genetic disease, but also a perfect tissue match for their sick children.

The screening technique has already been used in America, and this week Britain also gave the go-ahead for scientists to create " designer " babies to act as donors for seriously ill siblings.

Until now, the law has not been challenged in Australia.

Professor Trounson said it frustrated him " a little " that the technology was available to save children, but that the law may prevent it.

" But we live in a democracy and we need to explain what we are doing and why, " he said.

" Critics could say this is a slippery slope, but that is an argument used in a trivial way.

" We are adult enough to say no to cloning, but this has got to do with helping a dying child. "

ITA chief executive Helen Szoke said the authority had yet to receive an official application for the procedure, though informal discussions had taken place.

" If that happens, if the ITA makes a decision either way, we would inform the Health Minister of that decision, " Ms Szoke said.