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.
Key points:
- Unclaimed eggs in IVF freezers should be automatically donated to research, argue parents and researchers
- These eggs are needed for pivotal clinical trials aimed at reducing severe mitochondrial DNA disorders that can limit children’s life expectancy.
- The trials follow passage of Maeve’s Law, allowing three people’s DNA to create IVF babies to prevent mitochondrial disease
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.
“I’m suggesting that, instead of those eggs being discarded automatically when women can’t be contacted, the default option should be that they actually get donated to research instead,” Professor Mills said.
“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.
“Any mother [who is] carrying some defective mitochondria, when it comes to that mother wanting to have a child, she would be able to have the healthy mitochondria of another mother donated as part of the IVF process,” he said.
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.
“It’s actually quite an aggressive disease that, unfortunately, takes children’s lives generally between the ages of five and eight.”
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.
Dr Mike Freelander is a Labor politician and pediatrician who helped pass Maeve’s Law through the last parliament.
He says any change needs to be clearly communicated to women going through the elective egg-freezing process.
“I think it needs to be explained if you don’t opt out, then the opt in is the default option,” he said.
“And, I think, that will allow more of the eggs — and remember these are unfertilized eggs and not embryos — to be available for this technique.
“That needs to be very carefully explained to people and in a very transparent manner.”
Ultimately, Dr Freelander supports the proposal.
“I would point out this is very much my personal view,” he said.
“And others may have different views—and I respect that.
“But, you know, I looked after a number of children who have died from mitochondrial disorders and I’m very excited about this technique being available so that we can reduce the number of children born with these severe neurological disorders.”
Back in Queensland, Mr Hood answers with great emotion, when asked if he’s making the most of the finite time he has with his daughter.
“Oh, without a doubt, without a doubt,” he said.
Watching his daughter’s strength and perseverance has changed the way he sees the world, and helps give him clarity about what is important.
“It gives you perspective, you know, there’s things that happen every day, like someone cuts you off in line or something small happens, that’s not a big deal,” he explained.
“When something like this happens for someone like Maeve, that just gives you perspective.”
His message to those skeptical of the proposal is simple.
“I would just recommend you educate yourself and have a listen to the positives to what’s actually taking place — and, obviously, to the negatives,” he said.
“But I do believe once those [who] are listening — who understand it fully — will see the great benefit and where we’ll be in a couple of generations time if we can make these clinical trials work.”
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