Crucial step towards Australia legalising 'three-person IVF'
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Crucial step towards Australia legalising 'three-person IVF'

Rhonda Murray was 32 when she learnt her family were players in a deadly genetic lottery.

The artist was diagnosed with mitochondrial disease after her brother Peter had a stroke-like episode when he was 34. The disease would eventually kill him and Rhonda’s mother.

Rhonda Murray with her daughters Annie and Cassie.

Rhonda Murray with her daughters Annie and Cassie. Credit:Sylvia Liber

Ms Murray's daughters Annie, 19, and Cassie, 17, also have the faulty genetic mutation in which a person’s defective mitochondria robs a body’s cells of energy, causing organ dysfunction and death.

Some people have no symptoms, some have mild symptoms and one child born every week will develop the severe or life-threatening form of the disease.

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But Ms Murray hopes their children and future generations will escape it.

Australia may be one step closer to legalising "three-person IVF" to prevent babies from being born with debilitating and potentially deadly disease affecting an estimated one in 5000 Australians.

The federal government has broadly accepted the recommendations of a Senate inquiry into the implications of mitochondrial donation, announcing an expert panel and public consultation process.

“I see so many sick babies with mitochondrial disease, with a very short life expectancy, and I just don’t want my daughters to go through that,” Ms Murray said.

“With mitochondrial donation, there is a big chance my daughters will avoid that and we can eliminate this defect from our family for good,” she said.

The IVF technique involves removing a woman’s faulty DNA from her egg (0.1 per cent of the egg’s genetic material) and replacing it with the mitochondrial DNA of a healthy donor egg.

Rhonda Murray lost her mother and brother to mitochondrial disease.

Rhonda Murray lost her mother and brother to mitochondrial disease.Credit:Sylvia Liber

It currently falls foul of two pieces of legislation – the Research Involving Human Embryos Act and the Prohibition of Human Cloning for Reproduction Act because it involves changing the genetic make-up of an embryo.

“Science has moved significantly faster than legislation,” and the laws now stall research and prevent its use in clinical practice, the Senate inquiry concluded.
The NHMRC panel is expected to report back in April 2019, kicking off a community-wide consultation process to thrash out the complex and controversial prospect of legalising mitochondrial donation in Australia.

But the “long and complex task” may not yield an answer until October 2020, according to the government.

“The safety and efficacy of this technology is unclear and evidence from clinical practice is unavailable,” the government’s response to the report read.

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Two of the unknowns relate to the potential for mutated mitochondrial DNA to carry over into other parts of an embryo, and the matching of healthy donor eggs.

The UK is the only country that has regulatory framework mitochondrial donation, licensing clinics and families to perform and undergo the technique.
Neurologist and mitochondrial disease specialist Professor Carolyn Sue said the weight of scientific data showed it was time to offer mitochondrial donation to patients in tightly regulated and highly specialised Australian clinics.

“We now believe it is safe and will benefit our patients, and unless we introduce this to them we are not going to progress or improve the technique any further,” Professor Sue said.

“Our patients are really keen to take on this technology. They are desperate to have children who are not at risk or have a much lower risk of having this disease,” she said.

Mito Foundation chief executive Sean Murray said the government’s response was “a crucial step” and was confident the Australian public would support the regulation of the IVF technique in Australia.

But he urged policymakers to expedite the proposed 18-month process.

“It’s of vital importance that this is not rushed or ill-considered, but we need to make sure this progresses as quickly as possible,” he said.

Kate Aubusson is Health Editor of The Sydney Morning Herald.

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