Mitchondrial Donation is an IVF technique with the potential to prevent mitochondrial disease in the next generation. Have your say.
You have until 29 November to make your voice heard during the public consultation period. It is vital that families affected by mito make a submission to help establish a strong case for the legalisation of mitochondrial donation. After reading the NHMRC Issues Paper*, we encourage you to prepare your responses to the ten questions and then input your answers in the online survey.
What is mitochondrial disease?
Mitochondrial disease (mito) is a debilitating genetic disorder that robs the body’s cells of energy, causing multiple organ dysfunction or failure.
One Australian baby is born every week with a severely disabling form of mito. Sadly, most children diagnosed with mito die in the first five years of life.
An estimated one in 200 people, or 120,000 Australians, carry the genetic change that puts them at risk of developing mito, or passing it on to their children.
What is mitochondrial donation?
Mitochondrial donation is an IVF-based technique with the potential to prevent mitochondrial disease (mito) in the next generation of Australian children.
Mitochondrial donation involves removing the nuclear DNA from a patient’s egg containing faulty mitochondria and inserting it into a healthy donor egg, which has had its nuclear DNA removed. This can be done before the egg is fertilised (maternal spindle transfer) or post fertilisation (pronuclear transfer). The fertilised egg is transferred into the mother exactly as per current IVF practice.
As the nuclear DNA is retained, the unique genetic information (that makes us who we are and determines what we look like) is passed on from mother to child, but the mitochondrial defects are not.
While mitochondrial donation is legal in the UK, it is not yet legal in Australia.
Facilitated by the NHMRC (National Health and Medical Research Council) on behalf of the Australian government, a public consultation is now open until 29 November 2019 to seek community views on the possible introduction of mitochondrial donation into Australian clinical practice.
What impact would mitochondrial donation have?
Legalising mitochondrial donation would allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which will drastically limit their life.
An estimated 56 babies born each year in Australia could potentially be saved from inheriting mitochondrial disease.
Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits, are unable to work and may need full time care. By protecting the next generation from mitochondrial disease, mitochondrial donation would have positive economic impact by removing this reliance on community, healthcare and social services systems.
These stories highlight the real impact on real Australians:
Shelley had never heard of mitochondrial disease until 3 years ago - when her mother experienced a rapid decline in health.
The Beard Family
In May 1997 everything changed for the Beard family when their daughter, Pippa, woke up in severe pain, unable to move.
Rhonda was 32 years old when she learnt her family was living under the shadow of mito.
Pam was diagnosed with MELAS, a maternally inherited form of mito, in her mid-forties.