Three-parent babies: Calls to allow controversial Mitochondrial Donation procedure in Australia

Three-parent babies: Calls to allow controversial Mitochondrial Donation procedure in Australia

Three-parent babies: Calls to allow controversial Mitochondrial Donation procedure in Australia

Updated 20 November 2017, 18:20 AEDT

There are calls for ground-breaking reproductive technology, which prevents parents from passing on a debilitating and potentially fatal genetic disease, to their children to be made legal in Australia.

There are calls for ground-breaking reproductive technology, which prevents parents from passing on a debilitating and potentially fatal genetic disease to their children, to be made legal in Australia.

Britain is the first country in the world to approve the technique, permitting the creation of what has been coined as "three-parent babies", where the child has DNA from the biological parents and a donor.

The controversial method is the subject of ethical debate around the world but provides hope for couples like Shelley and James Beverley.

The couple, who live south of Hobart and have been married for seven years, are keen to start a family.

But in the past two years Mitochondrial Disease has caused enormous heartache and forced them to re-think their plans.

"It's something that came out of nowhere and has devastated half our family," Shelley Beverley, 32, told 7.30.

"My Mum (Mary Powell) passed away in February last year, and then my brother (Neil Powell) ... passed away in June this year."

Neither knew they had Mitochondrial Disease.

After the deaths of her mother and brother, Ms Beverley was tested and discovered she too had the disease.

It helped explain some of her medical issues.

She suffers from profound hearing loss, muscle weakness, Type 2 diabetes and has a heart condition.

"We thought we could have children naturally," she said.

"It's not just the emotions you are dealing with, with having the symptoms yourself, but it is also about how you could pass that on to your children, and that's a very scary thought."

Three-parent babies

Mitochondrial Disease is a rare condition that robs the body's cells of energy, causing multiple organ dysfunction.

"At the mildest end you might have muscle weakness, but very often diabetes, deafness, vision loss, heart disease," Professor David Thorburn from the Murdoch Children's Research Institute said.

"At the most severe end you have children who are born and die in the first days of life from overwhelming organ failure."

About 1 in 200 people will carry a Mitochondrial genetic defect and 1 in 5,000 will develop a life threatening form of the disease.

Often the condition is undiagnosed or misdiagnosed because of the wide-ranging and varied symptoms.

But now ground-breaking reproductive technology is providing an answer for couples like Shelley and James.

It's a procedure called Mitochondrial Donation.

In simple terms, the mother's faulty Mitochondrial DNA is replaced with healthy Mitochondria from a donor woman during the IVF process.

The resulting baby has DNA from three people, the vast majority from its parents, and a tiny percentage from the donor.

Thus the term "three-parent babies".

''The child will inherit 99.9 per cent of the DNA from the biological mother and the biological father," Sean Murray of the Australian Mitochondrial Disease Foundation explained.

"We're not changing any other characteristics about them in terms of intelligence, eye colour, hair colour, how tall they are; this is purely to make a healthy baby."

For Ms Beverley the technique provides a glimmer of hope.

"I don't see this process as cloning, I don't see it as designing a baby ... playing God," she said.

"If we can consider having a healthy child that we know we are giving the best chance to, that is all we want."

But for now, the technique is not available to families in Australia.

'The precedent has been set in the UK'

A clinic in Newcastle in the north-east of England, is the only facility in the world with a licence to conduct Mitochondrial Donation.

Neurologist Professor Sir Douglass Turnbull heads the Wellcome Trust Centre for Mitochondrial Research at Newcastle University.

"This has been a very complex process," he said.

"We started doing research in 2000 and it went through parliament in 2015.

"To have the opportunity to provide real reproductive choice for these families I think is very important.

"The patients are obviously very pleased, thrilled to have the choice."

Now there is a push for Mitochondrial Donation to be approved for use in Australia.

"I think the precedent has been set in the United Kingdom," Mr Murray said.

"This technique has been exhaustively researched in the UK.

"We need to keep in mind that this technique exists purely to prevent the transmission of disease."

Ethical and legal issues

Critics of the process argue it is a form of genetic modification and open to misuse.

Associate Professor of Bioethics at the University of Sydney, Dr Ainsley Newson, expects two groups to raise concerns when the public debate begins in Australia.

"One group are scientists who are concerned about the safety implications, things we can't measure in the lab like the long term evolutionary implications of using this technology," she said.

"And the other group are those concerned potentially on religious grounds or worried about the status of embryos and eggs and believe we shouldn't be using any technologies that manipulate or otherwise interfere with human eggs and embryos.

"I do think this technology might be something that people are slightly fearful of to begin with, as was the case with IVF, but then perhaps as it goes on we may see a change in attitudes."

Then there are the legal challenges.

"In Australia there are two pieces of legislation, one around the prohibition of human cloning and one around manipulation of human embryos, that prevent introducing DNA from a third person into any sort of embryo," Professor Thorburn said.

"So in Australia the legislation would have to be changed at the federal level and then at the state level.

"This is not some quirky science fiction thing, this is to prevent really serious diseases that destroy families ... and they just don't want to inflict it on their own children."

Ms Beverley is watching the program in Newcastle with interest.

"I've been in contact with the clinic that has been established in the UK to determine whether we would be eligible for the process of Mitochondrial Donation," she said.

"I'm waiting on a response."

The first babies from the program in Newcastle are expected to be born next year.

"We will establish the procedure for our local patients first, before we extend this into overseas patients," Professor Turnbull said.