Submission to Medical Services Advisory Committee
Over the last few years the capacity to test for genetic conditions such as Down syndrome before birth has increased. It is now possible to detect various chromosomal conditions prenatally through a blood test also known as a non-invasive prenatal screening (NIPS). The Medical Services Advisory Committee (MSAC) received two applications in July 2016 to add NIPS to the Medicare Benefit Scheme.
Down Syndrome Australia has provided a comprehensive submission which outlines our concerns about these applications.
Down Syndrome Australia believes that prenatal screening must be accompanied by appropriate information to support families in making informed decisions about screening and how to respond to the results. Providing a screening test without ensuring informed consent, adequate support and up-to-date information regarding the results is unethical.
It is important to note that Down Syndrome Australia recognises the right of all women to choose to continue or to terminate a pregnancy. Marking such decisions can be extremely difficult and our concern is regarding the accuracy of the information being provided to inform that choice.
Given the evidence of significant issues around informed consent, inaccurate information being provided and lack of access to appropriate post-screening counselling, Down Syndrome Australia recommends that MSAC does not approve NIPS to be listed on the MBS until such time as appropriate information and supports are put in place. We make the following recommendations to the Australian Government:
- The Government supports the development of national resources and a national training program for health professionals (including GP’s, midwives, Obstetricians etc.) who are involved in prenatal screening to ensure that they are skilled on providing informed consent and appropriate post screening counselling.
- The Government ensures access to post-screening counselling by appropriate health professionals (e.g. genetic counsellors). As part of this counselling, families should be supported to be connect to other families through Down syndrome organisations. Access to counselling should be supported by creating a specific MBS item for provision of post-screening counselling.
- Down Syndrome Australia recommends that the Government work closely with representative organisations and people with Down syndrome to develop a public awareness campaign to tackle the stigma associated with intellectual disability and raise public awareness around Down syndrome and other chromosomal disorders