As many in our community would be aware, over the last several years the Government has been considering an application for Non-invasive prenatal (NIPS) screening to be publicly funded. This is the blood test which is available from the 10th week of pregnancy. This test analyses both maternal and foetal cell-free DNA circulating in maternal blood to provide either a high probability or low probability of a baby having Down syndrome. This is a screening test and any results do not provide a definitive diagnosis of Down syndrome.
Down Syndrome Australia is pleased to learn that the Medical Services Advisory Committee (MSAC) has met to discuss this application and has decided to not recommended the public funding of the Non-invasive prenatal screening (NIPS) test.
We understand that access to prenatal screening is important for many families and respect the right of women to have prenatal screening if they choose to do so. Women can continue to access publicly funded screening through the combined first-trimester screening and some families will choose to access NIPS privately.
It is absolutely essential that any genetic screening program in Australia is done ethically and that families have access to balanced and timely information. The evidence suggests that despite the existence of guidelines, families are not getting the information and support they need to make informed decisions.
But now, some of the concerns of our community have been heard.
Down Syndrome Australia has taken a leadership role over the last several years to advocate for NIPS to not be publicly listed. Our work has included submissions to MSAC, petitions, meetings with the Department of Health, and with relevant Ministers and staff, self-advocate involvement and videos and a submission to the Royal Commission. We have also encouraged and supported our members to get in touch with MSAC and their local MPs about these issues. We have argued for the need for access to balanced information as well as clearly articulating the economic argument against public funding for a universal screening program, including meeting with staff from the Treasurer’s office. We are pleased that our work has contributed to this important decision for our community.
Down Syndrome Australia does not support the public funding of a universal NIPS screening program. Further work must be done to ensure that all women are supported to make informed choices both pre- and post-screening (for NIPS or the more traditional combined first trimester screening), regardless of whether they choose to terminate or to continue the pregnancy.
“It is unethical to implement a screening test in any population without providing the appropriate referrals and supports including up-to-date and accurate information,” says Down Syndrome Australia CEO Dr Ellen Skladzien.
“The misinformation, coercion and lack of support experienced by some parents undergoing prenatal screening constitutes a form of neglect and abuse within the health care system. We will continue to advocate for change to ensure all women have access to clear and accurate information both before screening and after any unanticipated results.”
Thank you to all of our supporters who have been part of raising these issues and providing their input to the MSAC process. We look forward to your continued support as we advocate to improvements to the information provided to families about Down syndrome.
You can read more about Down Syndrome Australia’s position on prenatal screening here.
