Cloning law change urged in fight against genetic disorder

A procedure to create "three-person babies" could be on its way to Australia, with a campaign launched to overhaul a law on human cloning in an attempt to prevent babies from suffering a severe genetic disorder.

Changes are under way in Britain to allow women at risk of having a baby with potentially fatal forms of mitochondrial disease to undergo a controversial procedure known as mitochondrial donation.

It involves replacement of the mother's faulty DNA (or 0.1 per cent of her egg's genetic material) with healthy donor mitochondrial DNA.

The involvement of the DNA of three people has led to the term "three-person babies", though it is said the donated DNA involves only 37 genes that regulate how the baby converts food and oxygen into energy.

The baby retains more than 20,000 genes from its mother and father that determine appearance, intelligence, behaviour and other characteristics, according to the Australian Mitochondrial Disease Foundation.

On Thursday the foundation is launching a campaign to overturn laws preventing Australian women from accessing the procedure at IVF clinics. It says the procedure could prevent 60 Australian babies being born each year with "severely disabling and potentially fatal forms of mitochondrial disease".

Professor David Thorburn from the Murdoch Children's Research Institute said mitochondrial donation fell foul of two pieces of legislation - "one is the prohibition against human cloning" and the other addresses embryo manipulation.

"It is not human cloning by any means, but the procedures that are used overlap with that and it's clear that in Australia it would be illegal to mix the genetic material from three individuals," he said.

Professor Thorburn said that so far all evidence suggested the procedure could be done safely.

Melbourne woman Bethany Hodge is keeping a close eye on any possible law change.

It has always been the 24-year-old's dream to have a baby, but watching her sister struggle with mitochondrial disease's debilitating effects has made her reconsider bringing her own biological child into the world.

The condition runs in the family and while Ms Hodge is asymptomatic her sister Annaliese has grappled with the physical, mental and emotional impact since birth.

Annaliese, 23, suffers from constant hand tremors that make it almost impossible to do everyday tasks like pouring a glass of water.

"She struggles to eat because she can't stabilise her hand to use a fork and knife," Ms Hodge said.

"Simple things that other people take for granted are impossible for her.

"It's really awful at times, because people will just stare at her at restaurants without any idea of what she is going through."

Her brother also has the condition and was recently knocked back for his pilot's licence after discovering he had a heart condition linked to the disease.

Australian Mitochondrial Disease Foundation chief executive Sean Murray said people with the disease could lose their sight or hearing, be unable to walk, eat or talk normally, have strokes or seizures and experience developmental delays or intellectual disability.

"You wouldn't wish mitochondrial disease on your worst enemy, so the prospect of mitochondrial donation is a beacon of hope for women who don't want to risk their babies suffering or dying from mito," he said.

"The groundwork has already been laid in the UK, with extensive research and a 10-year global scientific and ethical review leading to the establishment of the world's first regulated system to provide mitochondrial donation."

However, a spokeswoman for the federal Health Department said the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002 were not under review.

She said the National Health and Medical Research Council was not aware of any plans to review the legislation.

This story Cloning law change urged in fight against genetic disorder first appeared on The Sydney Morning Herald.