ONE child a week is born with a severe form of Mitochondrial Disease in Australia.
The disease affects the mitochondria of human cells and leads to muscle fatigue, seizures, fatigue and can be fatal.
Think of mitochondria as the powerhouses of human cells.
These powerhouses produce more than 90 per cent of the energy a person needs to sustain life.
Mitochondrial disease, often called mito, reduces the ability for mitochondria to produce this energy.
The disease is not well-understood and very rare, but it has seen media attention before.
One story of mitochondrial disease brought a spotlight on the issue in 2017.
International media had followed the story of Charlie Gard, a British baby who had a mitochondrial disease called encephalomyopathic mitochondrial DNA depletion syndrome.
Charlie died on July 28, 2017, a little more than a week before his first birthday.
Charlie and his family were caught in a legal battle over his continued access to life support.
The hospital officials wanted to remove life support but the parents launched a legal battle and eventually crowdfunded more than $1.7 million to have him moved to the United States where he could continue to access the life support.
The situation had caught the world’s attention, including the attention of Pope Francis.
The day the parents dropped their legal battle, Greg Burke, then director of the Holy See press office, said the Pope was “praying for Charlie and his parents and feels especially close to them at this time of immense suffering”.
After news of Charlie’s death, Pope Francis tweeted – “I entrust little Charlie to the Father and pray for his parents and all those who loved him”.
In Australia, Federal Health Minister Greg Hunt has begun a push for a bill to legalise an experimental treatment involving partial DNA donations that could stop the disease from passing from mother to child.
The bill is called Maeve’s Law, named after the five-year-old daughter of Joel and Sarah Hood who live in Mr Hunt’s Victorian electorate.
Maeve has a severe type of mitochondrial disease.
“She is bright, she is bubbly, a beautiful young girl, but she suffers from the most challenging of medical issues,” Mr Hunt said in an impassioned speech to parliament.
“Maeve is thankfully still with us but her family still lives with daily uncertainty about the future.”
The Catholic Church opposes this law on grounds of efficacy and bioethics.
In the Australian Catholic Bishops Conference submission to the Senate Community Affairs Committee Inquiry into Maeve’s Law, the bishops said there were more effective ways to stop the disease and the donation scheme raised serious bioethics issues.
For one, IVF with egg donation – a treatment opposed by the Church but one that is legal in Australia – already allows parents to have a child without the risk of mitochondrial disease.
“Mitochondrial donation, which genetically modifies a human embryo or egg, adds issues of safety and ethics with no benefit to health,” Bishop Delegate for Life Sydney auxiliary Bishop Richard Umbers said.
“These techniques increase the risk of the child carrying the disease for the sake of having a genetic relationship with the mother.
“Mitochondrial donation will not cure children who are sick.”
The bishops said the procedure had been legal in the United Kingdom for five years, and the regulating authority had approved pregnancies, but there have been no reported live births in the UK using a mitochondrial donation technique.
“The Government admits that ‘the risks for children born using these techniques are not yet fully understood and the available scientific evidence to support this procedure is limited’, which underlines how premature this legislation is,” Bishop Umbers said.
The draft legislation would open the door to three unique ethical problems.
Firstly, it would allow researchers to change the human genome, meaning any changes are heritable over generations.
Secondly, it would allow human embryos to be created and destroyed purely for research and training – something that is forbidden.
Thirdly, a human embryo could also be created from the genetic material of three people, seeing three-parent embryos created for the first time.
“Each of these firsts would have serious implications, but the draft legislation proposes Australia cross these thresholds even though there is doubt about whether mitochondrial donation is safe and practical,” Bishop Umbers said.
“The (bishops) conference opposes the legislation, but at the very least asks that the legislation be paused so there is time to assess the progress of work in the UK’s mitochondrial donation program.”
Both major political parties have said their members will be allowed a conscience vote on the bill.
