If funded by Medicare, this reproductive genetic carrier screening will allow more Australian families to know if their future children are at risk of developing a severe childhood form of mitochondrial disease (mito) and understand all available options. Thank you to the families within the mito community who shared their stories as part of this submission. You can read our submission here.
This image is of young Dion, who sadly passed aged 3.
This advocacy complements the mito community’s work on mitochondrial donation. Families, where mito is caused by a change in their mitochondrial DNA, may choose to explore mitochondrial donation. Families with a risk of having a child with mito caused by a change in their nuclear DNA may benefit from carrier screening. Together these technologies support choice for all families.
Reproductive genetic carrier screening can give prospective parents information about their likelihood of having a child with a severe genetic condition. We recognise that most children born with one of the genetic conditions included in this screening have no family history of that condition. Therefore most couples are unaware they have an increased chance of having an affected child. Couples with an increased chance of having a child with any of these genetic conditions are then supported and informed about their reproductive options, enabling them to choose according to their values.
This application for Medicare funding has been made by the team from Mackenzie's Mission. Mackenzie's Mission is a research project giving access to reproductive genetic carrier screening to around 10,000 Australian couples. The project aims to better understand how couples feel about screening, the ethical issues raised by screening and what is needed in our health system to support screening.
Mito Foundation has been a key partner in Mackenzie's Mission, including through membership in the project's engagement reference group.
You can learn more about reproductive genetic carrier screening and Mackenzie's Mission at: mackenziesmission.org.au.
Mito Foundation's submission supports the Medicare funding of this screening and describes how devastating childhood mito is. The submission also highlights the importance of genetic counselling throughout the screening process and community input into what genes are included in screening.
Mito Foundation will keep you updated on the progress of this application for Medicare funding. If you have questions about how this applies to you and your family, contact the Helpline.
You can see how else Mito Foundation is advocating for health system changes on our Driving Change webpage.