Mitchondrial Donation is an IVF technique with the potential to prevent mitochondrial disease in the next generation.
Public consultation on the introduction of mitochondrial donation into Australian clinical practice was conducted between September and November 2019. We thank all of the mito community and general public who contributed to this process.
Significant interest was generated in the media during and post the public consultation period and we are grateful to all of the mito families that so openly shared their personal stories.
The NHMRC has publicly released the final report and advice from its Mitochondrial Donation Expert Committee which are now available on the NHMRC website. These reports were sent to Federal Health Minister Greg Hunt in March, marking the finalisation of the Committee’s work and the public consultation process.
We now await advice as to the timing of draft legislation being presented to parliament.
You can still help the process by engaging your local MP and sharing why you feel mitochondrial donation is important. Please call our office on 1300 977 180 and we can help you to make a difference.
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, public consultation was open from September til 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.