Directions for South Australia – Pre-implantation Genetic Diagnosis

“Where the technology exists to eradicate Huntington’s in the future, the pain for families of not doing so is unbearable.” – Kelly Vincent MLC

Introduction:

The Dignity Party stands for dignity for all, including couples whose children are at risk of inheriting the debilitating condition, Huntington’s Disease (HD). HD is a genetic brain disorder that causes sufferers to lose their ability to walk, talk, think and reason over the course of 10 to 20 years.

Reproductive technology has developed to the point that it is now possible to eradicate from families inherited diseases, such as HD, through the use of pre-implantation genetic diagnosis (PGD).  However, access to IVF and PGD costs tens of thousands of dollars so it is limited to those who can afford it: This is a shocking inequity, with terrible ramifications for future generations of families that cannot afford those options.

It’s a harsh reality that some families are put in the unfathomable position of choosing to risk having a child with inherited disease, or have no children. The Dignity Party believes that those who wish to undergo IVF and PGD should be able to, whatever their bank balance.

Medicare and private health insurance cover a portion of the cost for IVF but not PGD, despite the obvious benefits of preventing inheritance of serious genetic conditions.

The Dignity Party supports making IVF and PGD more affordable for those potential parents who wish to ensure their children and future generations are HD free.

It is important to note that many disabled people are proud of their disabled identity. Dignity Party does not support the blanket eradication of all disabilities, leaving it up to personal choice. Our focus is on making SA accessible to, and accepting of, all.

 Action:

The Dignity Party want the reproductive technology of pre-implantation genetic diagnosis (PGD) available under Medicare for all couples whose children are at risk of inheriting Huntington’s Disease, and who elect to use the technology.

The Dignity Party call on the Federal Government to include PGD on Medicare. We believe that implementation of this policy will, over time, be cost neutral as future generations are spared the debilitating impact of Huntington’s Disease and associated health costs.

The Dignity Party also call for more research into Huntington’s Disease and increased support for people living with this condition, their family and carers.


Dignity Party OPPOSE the inequity in accessibility to IVF and PGD based on affordability.

Dignity Party PROPOSE the Federal Government include PGD on Medicare to make it affordable and provide choice for families unwilling to risk passing on inherited disease, such as Huntington’s.