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Ground-breaking technique to reduce risk of potentially fatal genetic diseases could soon be legal in Australia

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a person sitting at a desk: The technique allows the genetic information that makes us who we are to be passed on from mother to child, but not the mitochondrial defects. (ABC News: Jessica van Vonderen, file)

The technique allows the genetic information that makes us who we are to be passed on from mother to child, but not the mitochondrial defects. (ABC News: Jessica van Vonderen, file)

A ground-breaking medical technique that could reduce the risk of children developing a debilitating and potentially fatal genetic disease could soon become legal in Australia, following years of campaigning from advocates and families.

In Australia, about one child a week is born with a severe form of mitochondrial disease, a rare condition that robs the body's cells of energy.

Between one in 5,000 and one in 10,000 people are likely to develop severe mitochondrial disease during their lifetime, with common symptoms including developmental delays, seizures, weakness and fatigue, and multiple organ failure and heart problems.

The Federal Government now wants a medical technique called mitochondrial donation to be implemented in Australia under a two-stage process, with the Health Minister Greg Hunt briefing his colleagues on the issue at a party room meeting on Tuesday.

A bill will be introduced to Parliament in the coming months, proposing legalising mitochondrial donation for use in research settings and through an initial pilot site, before permitting it in clinical practice more broadly.

Coalition MPs and Senators will be allowed a conscience vote on the legislation, which has been the subject of the ethical debate around the world.

Mitochondrial donation is an assisted reproductive technology that can help parents avoid transmitting mitochondrial DNA disease to their biological children.

Various techniques allow for an embryo to be produced using the nuclear material (DNA contained in each cell nucleus) from a man and woman, as well as the mitochondria in an egg donated by another woman.

As a result, the unique genetic information that makes us who we are is still passed on from mother to child, but the mitochondrial defects are not.

Mitochondrial donation is commonly referred to as "three-parent IVF" however federal Liberal MP and paediatrician Katie Allen said the term was misleading, with the dominant DNA in any child born using the method being that of their biological mother and father.

"This is like a sub-organ donation," she said.

"Mitochondrial donation isn't something that alters the personal characteristic of a person.

"It's the battery pack of the cell for the body to function, just like the liver is the battery pack for the body.

"Just like a liver transplant doesn't mean you don't inherit the tendencies of a person, so too a mitochondrial transplant doesn't mean you inherit the characteristics of that person."

Under the legislation, egg donors would not be considered legal parents of any child born using the method, in line with current arrangements for sperm and egg donors in Australia.

Labor MP and paediatrician Mike Freelander welcomed the Government's decision to move to legislate the technique, saying it would give hope to families.

"As someone who has looked after children who have died from mitochondrial disorders, I know what a heartbreaking and devasting illness this is, and if we can prevent it surely that's a very good thing."

Why does mitochondrial donation raise ethical issues?

In 2015, the United Kingdom became the first country to legalise the procedure, strictly to prevent genetic disease.

It sparked debate about whether Australia should follow Britain's lead, with current Australian legislation prohibiting the use of mitochondrial donation in clinical practice.

The Government has been investigating whether to use the technique, undertaking public consultation through a Senate inquiry and the National Health and Medical Research Council (NHMRC).

The NHMRC community consultation report noted several submissions raised concerns about the use and destruction of one embryo to allow for the creation of another embryo with healthy mitochondria.

Some submissions also raised ethical concerns about the use of mitochondrial donation to modify embryos to produce children with perceived improvements or customisations, comparing it to genetic engineering.

Overall, there is strong support for legalising the procedure in Australia among medical and scientific experts, although most supporters want a cautious and highly regulated introduction.

The NHMRC has recommended the Government continue consulting with the community as it moves to introduce the procedure.

In a statement, Mito Foundation chief executive officer Sean Murray said the Government's decision was a welcome next step towards preventing mitochondrial disease in the next generation of Australian children.

"Every step and every vote for legalising mitochondrial donation is a step in the right direction," he said.

"Legalising mitochondrial donation in Australia will allow parents to reduce the risk of their children developing mitochondrial disease and of this terrible disease being passed on through future generations."

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