Author: mangakiko

A leading bioethicist has called for unclaimed eggs in IVF clinical freezers to be donated to clinical research rather than be thrown in the bin.

Monash University bioethicist Professor Catherine Mills says the eggs are needed for upcoming clinical trials that will try to find ways to eliminate the possibility of children being born with mitochondrial diseases.

Many children born with these conditions don’t make it to the age of 10, and there is no cure.

“The current situation with unclaimed eggs is that, at the end of the 10-year period, or the 10-year freezing period, clinics make quite a lot of effort to contact women whose eggs have been frozen,” she said.

“When they are able to contact women, those women are given the option of donating to reproduction, donating to research, or discarding the eggs.

“Unfortunately, in some situations, they’re just unable to contact women or women don’t respond. So, then, in that circumstance, eggs have to be discarded.”

She wants changes to procedures, so women need to opt-out of having their eggs donated to research.

At the moment, in most situations, women need to opt-in to such an option.

“So the default option then becomes donation to research rather than just throwing this precious biological material away.”

Why the need for change?

There’s a very important reason for the move to change the way unused eggs are managed.

In March this year, Maeve’s Law was passed in the federal parliament.

Maeve’s Law allows Australia to proceed to a clinical trial of mitochondrial donation through IVF, meaning families can greatly increase their chance of having a healthy child unaffected by these disorders.

It does this by allowing another person’s mitochondrial DNA to be part of the IVF process.

The procedure involves transferring nuclear genetic material from the mother’s egg into a donor egg with healthy mitochondrial DNA that has had its nuclear DNA removed.

According to the Australian Mitochondrial Disease Foundation, a tiny fraction, or 0.1 per cent, of the resulting egg is mitochondrial DNA from the donor egg, in place of the mother’s faulty mitochondrial DNA.

The law is named after a six-year old girl called Maeve who lives with a mitochondrial disorder.

Maeve’s father, Joel Hood, explained what the law change means.

Mitochondrial disease is a genetic disorder that starves the body’s cells of energy, potentially causing multiple organ dysfunction or failure.

However, before IVF processes can start using this technology to eliminate the risk of children being born with severe mitochondrial disorders, clinical trials need to take place.

There is a country-wide shortage of the eggs necessary to undertake the trials and the scientific research needed to make the technology as effective as possible.

That’s why Professor Mills is proposing any unclaimed eggs from the elective egg-freezing process are automatically donated to clinical research.

Parents support the move

Mr Hood savors every day he gets to spend with his six-year-old daughter.

“She was diagnosed at 18 months of age with a mitochondrial disease called Leigh’s disease,” he said.

Despite the many challenges she’s faced in her short life, Mr Hood says Maeve has a positive outlook.

“She is fed through a feeding tube, although she’ll munch on the old biscuit here or there to act like her sisters,” he said.

“She goes to speech therapy weekly, physiotherapy weekly and she needs glasses to be able to see properly.

“She can communicate, but she only has certain words she can say.

“So she’s got a lot of challenges, but she’s a sweet young girl with a great attitude.”

For him, the proposed reform is a no-brainer. Mr Hood says it’s important the clinical trials are given every chance of success, so kids in the future have an easier life than Maeve has had.

“What happens is something that would be carried down from generation to generation — a defect that would be passed on, you know, quite an ugly defect that obviously causes death at quite a young age and severe illness throughout their life — would be able to be eradicated,” he said.

“And the beauty of that is, once it’s gone, it’s gone. So that family would never suffer from it.

“Whereas, if they were to choose to have children, there is a high likelihood that they would continue to pass that down the line, putting obviously great strain on the family, but also giving a child an unfair start to life.”

Ethical questions around consent

However, the proposal raises ethical questions.

While some would say donating unused eggs to medical research is no different to organ donation, others might be uncomfortable with their unclaimed eggs being used to further a technology that helps perfect the art of using three people’s DNA to create a child.